Form990
Click to see attachment
Department of the TreasuryInternal Revenue Service
Return of Organization Exempt From Income Tax
Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code (except private
foundations)
MediumBullet Do not enter social security numbers on this form as it may be made public.
MediumBullet Information about Form 990 and its instructions is at www.IRS.gov/form990.
OMB No. 1545-0047
2015
Open to Public Inspection
A For the 2015 calendar year, or tax year beginning 01-01-2015 , and ending 12-31-2015
BCheck if applicable:
CName of organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
% PRESTON W CAMPBELL MD
Doing business as
 
 
Number and street (or P.O. box if mail is not delivered to street address)
6931 ARLINGTON ROAD Suite 200
 
Room/suite
City or town, state or province, country, and ZIP or foreign postal code
BETHESDA, MD20814
D Employer identification number

13-1930701
E Telephone number

G Gross receipts $ 2,726,701,281
F Name and address of principal officer:
PRESTON W CAMPBELL MD
6931 ARLINGTON ROAD STE 200
BETHESDA,MD20814
I
Tax-exempt status: (   ) LeftBullet (insert no.) or
J
Website:MediumBullet
WWW.CFF.ORG
H(a)
Is this a group return for
subordinates?
H(b)
Are all subordinates
included?
If "No," attach a list. (see instructions)
H(c)
Group exemption number MediumBullet  
K Form of organization:  
L Year of formation: 1955
M State of legal domicile: DE
Part I
Summary
Activities  & Governance 1 Briefly describe the organization’s mission or most significant activities: THE MISSION IS TO CURE CYSTIC FIBROSIS AND TO PROVIDE ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES.
2 Check this box MediumBullet
3 Number of voting members of the governing body (Part VI, line 1a) ........ 3 19
4 Number of independent voting members of the governing body (Part VI, line 1b) ..... 4 18
5 Total number of individuals employed in calendar year 2015 (Part V, line 2a) ...... 5 315
6 Total number of volunteers (estimate if necessary) ............. 6 250,000
7a Total unrelated business revenue from Part VIII, column (C), line 12 ........ 7a -1,476
b Net unrelated business taxable income from Form 990-T, line 34 ......... 7b -9,131
Revenues Prior Year Current Year
8 Contributions and grants (Part VIII, line 1h) ......... 3,285,132,614 95,908,297
9 Program service revenue (Part VIII, line 2g) ......... 2,155,742 2,216,198
10 Investment income (Part VIII, column (A), lines 3, 4, and 7d ) .... 55,016,588 41,305,390
11 Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e) 6,708,116 9,029,211
12 Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12) 3,349,013,060 148,459,096
Expenses; 13 Grants and similar amounts paid (Part IX, column (A), lines 1–3 )... 32,902,431 132,612,012
14 Benefits paid to or for members (Part IX, column (A), line 4)..... 0 0
15 Salaries, other compensation, employee benefits (Part IX, column (A), lines 5–10) 25,951,581 32,239,198
16a Professional fundraising fees (Part IX, column (A), line 11e) ..... 192,000 192,000
b Total fundraising expenses (Part IX, column (D), line 25) MediumBullet9,120,691    
17 Other expenses (Part IX, column (A), lines 11a–11d, 11f–24e).... 20,975,426 27,943,551
18 Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25) 80,021,438 192,986,761
19 Revenue less expenses. Subtract line 18 from line 12....... 3,268,991,622 -44,527,665
Net Assets or Fund Balances; Beginning of Current Year End of Year
20 Total assets (Part X, line 16)............. 3,922,688,693 3,803,485,303
21 Total liabilities (Part X, line 26)............. 108,325,747 124,060,775
22 Net assets or fund balances. Subtract line 21 from line 20..... 3,814,362,946 3,679,424,528
Part II
Signature Block
Under penalties of perjury, I declare that I have examined this return, including accompanying schedules and statements, and to the best of my knowledge and belief, it is true, correct, and complete. Declaration of preparer (other than officer) is based on all information of which preparer has any knowledge.
Sign Here
JumboBullet
Signature of officer Date
JumboBullet
Type or print name and title
Paid Preparer Use Only
Print/Type preparer's name
Preparer's signature
Date
PTIN
Firm's name MediumBullet
Firm's EIN MediumBullet
Firm's address MediumBullet



Phone no.
May the IRS discuss this return with the preparer shown above? (see instructions) ..........
For Paperwork Reduction Act Notice, see the separate instructions.
Cat. No. 11282Y Form 990 (2015)
Form 990 (2015)
Page 2
Part III
Statement of Program Service Accomplishments
Check if Schedule O contains a response or note to any line in this Part III ..............
1
Briefly describe the organization’s mission: THE MISSION OF THE CYSTIC FIBROSIS FOUNDATION IS TO CURE CYSTIC FIBROSIS AND TO PROVIDE ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES BY FUNDING RESEARCH AND DRUG DEVELOPMENT, PROMOTING INDIVIDUALIZED TREATMENT, AND ENSURING ACCESS TO HIGH QUALITY, SPECIALIZED CARE. A LIFE-SHORTENING GENETIC DISEASE, CF AFFECTS THE LUNGS AND DIGESTIVE SYSTEMS OF MORE THAN 30,000 PEOPLE IN THE U.S. CURRENTLY, THERE IS NO CURE.
2
Did the organization undertake any significant program services during the year which were not listed on
the prior Form 990 or 990-EZ? .....................
If "Yes," describe these new services on Schedule O.
3
Did the organization cease conducting, or make significant changes in how it conducts, any program
services? ...........................
If "Yes," describe these changes on Schedule O.
4
Describe the organization’s program service accomplishments for each of its three largest program services, as measured by expenses. Section 501(c)(3) and 501(c)(4) organizations are required to report the amount of grants and allocations to others, the total expenses, and revenue, if any, for each program service reported.
4a (Code:   ) (Expenses $ 146,593,554 including grants of $ 128,220,285 ) (Revenue $ 2,216,198 )
MEDICAL PROGRAMS SINCE 1955, THE CYSTIC FIBROSIS FOUNDATION HAS BEEN DEDICATED TO CURING AND CONTROLLING CYSTIC FIBROSIS (CF). THE CYSTIC FIBROSIS FOUNDATION IS THE WORLDS LEADER IN THE SEARCH FOR A CURE FOR CYSTIC FIBROSIS, A LIFE-THREATENING GENETIC DISEASE THAT AFFECTS MORE THAN 30,000 PEOPLE IN THE UNITED STATES, AND 70,000 PEOPLE WORLDWIDE. THE TREATMENT AND CARE PROTOCOLS DEVELOPED BY THE CF FOUNDATION ARE HELPING TENS OF THOUSANDS OF PEOPLE WITH THE DISEASE LIVE LONGER, HEALTHIER LIVES. TO SUPPORT ITS MISSION, THE FOUNDATION FUNDS AND ACCREDITS A NATIONWIDE NETWORK OF 120 CARE CENTERS. THE CARE CENTER NETWORK PROVIDES THE BEST CARE FOR PEOPLE WITH CF AND HAS BEEN RECOGNIZED BY THE NATIONAL INSTITUTES OF HEALTH AS A MODEL OF CARE FOR A CHRONIC DISEASE. BREAKTHROUGH TREATMENTS HAVE ADDED YEARS TO THE LIVES OF PEOPLE WITH CYSTIC FIBROSIS. TODAY THE MEDIAN PREDICTED SURVIVAL AGE IS CLOSE TO 40. THIS IS A DRAMATIC IMPROVEMENT FROM THE 1950S, WHEN A CHILD WITH CF RARELY LIVED LONG ENOUGH TO ATTEND ELEMENTARY SCHOOL. THE FOUNDATION PROVIDES MUCH-NEEDED SUPPORT FOR PATIENTS AND THEIR FAMILIES AS THEY MANAGE THE DIFFICULT CONSEQUENCES OF THE DISEASE FROM SUPPORTING SPECIALIZED, QUALITY CF CARE TO PROVIDING INFORMATION AND SUPPORT TO HELP PEOPLE WITH CF ACCESS THAT CARE. THE FOUNDATIONS PATIENT REGISTRY COLLECTS INFORMATION ON THE HEALTH STATUS OF MORE THAN 28,900 PEOPLE WITH CF PROVIDING CAREGIVERS AND RESEARCHERS CRITICAL INFORMATION TO HELP IDENTIFY NEW HEALTH TRENDS AND EFFECTIVE TREATMENTS AND IMPROVE THE QUALITY OF CF CARE. THE PATIENT REGISTRY IS AN INTERNATIONALLY RECOGNIZED MODEL FOR OTHER NONPROFIT HEALTH ORGANIZATIONS, INCLUDING CF ADVOCACY GROUPS. MEDICAL PROGRAMS CONSIST OF APPROXIMATELY 527 GRANTS AND OTHER COSTS TO SUPPORT SCIENTIFIC STUDIES/INVESTIGATIONS AND CYSTIC FIBROSIS CENTERS. APPROXIMATELY 307 GRANTS TOTALING $22.5 MILLION WERE AWARDED TO CYSTIC FIBROSIS CARE CENTERS SERVING APPROXIMATELY 28,900 PATIENTS.
4b (Code:   ) (Expenses $ 8,089,310 including grants of $ 4,391,727 ) (Revenue $   )
LACK OF ADEQUATE INSURANCE COVERAGE FOR CF MEDICATIONS HAS BEEN A CONSISTENT CONCERN FOR THOSE LIVING WITH THE DISEASE AND THEIR FAMILIES. THE PATIENT ASSISTANCE RESOURCE CENTER (PARC) IS A HIGHLY PERSONALIZED SERVICE TAILORED TO AN INDIVIDUALS CIRCUMSTANCES RELATED TO COMPLEX INSURANCE, FINANCIAL, LEGAL AND OTHER ISSUES THAT CAN PREVENT ACCESS TO MUCH-NEEDED CF THERAPIES AND CARE. IN 2015, SKILLED CASE MANAGERS HELPED MORE THAN 1,700 PEOPLE WITH CF AND THEIR FAMILIES UNDERSTAND AND MAXIMIZE THEIR INSURANCE COVERAGE AND BENEFITS. CASE MANAGERS ALSO ASSISTED MANY OTHERS WITH FINDING RESOURCES FOR ISSUES RELATED TO LIFE WITH CF THAT CAN AFFECT ACCESS, INCLUDING BASIC LIVING AND FOOD EXPENSES. CYSTIC FIBROSIS PATIENT ASSISTANCE FOUNDATION CLOSED ITS PROGRAM AS OF DECEMBER 31, 2015. STAFF HELPED MORE THAN 1,200 PEOPLE SUCCESSFULLY TRANSITION TO A NEW PROVIDER TO ENSURE THAT THOSE INDIVIDUALS MAINTAINED ACCESS TO FINANCIAL ASSISTANCE TO HELP WITH MEDICATION COPAYS.
4c (Code:   ) (Expenses $ 12,455,800 including grants of $   ) (Revenue $   )
PUBLIC AND PROFESSIONAL INFORMATION AND EDUCATION TO BROADEN ITS REACH AND TO SUPPORT ITS MISSION, THE CF FOUNDATION HAS PROGRAMS DESIGNED TO IMPROVE THE KNOWLEDGE OF PEOPLE WITH CF AND THEIR FAMILIES, MEDICAL PROFESSIONALS AND THE GENERAL PUBLIC REGARDING THE DISEASE. IN 2015, THERE WERE 10 PUBLICATIONS AND 50 VIDEOS PRODUCED AND MADE AVAILABLE FOR PEOPLE WITH CF, FAMILIES, MEDICAL PROFESSIONALS, AND THE GENERAL PUBLIC. YEAR-ROUND, MEETINGS AND CONFERENCES PROVIDE UPDATES FOR CF RESEARCHERS, PHYSICIANS AND ALLIED HEALTH PROFESSIONALS AND OPPORTUNITIES FOR COLLABORATION ON FUTURE CF RESEARCH PROJECTS AND TREATMENT/CARE EFFORTS. IN 2015, OVER 2,902,412 UNIQUE VISITORS CAME TO THE CF FOUNDATIONS WEBSITE. FORM 990, PART III - PROGRAM SERVICE, LINE 4D COMMUNITY SERVICES THE CYSTIC FIBROSIS FOUNDATION PROVIDES YEAR-ROUND EFFORTS TO EDUCATE, INFORM AND EMPOWER INDIVIDUALS WITH CF AND THEIR FAMILIES ABOUT THE LATEST DEVELOPMENTS IN TREATMENT AND CARE. THE PROGRAMS ARE DESIGNED TO HELP THE GENERAL PUBLIC IN THE DETECTION OF THE DISEASE BY PROVIDING A REFERRAL SERVICE AND HANDLING INQUIRIES CONCERNING CYSTIC FIBROSIS. APPROXIMATELY 28,900 PEOPLE WITH CF WERE SERVED IN 2015, INCLUDING APPROXIMATELY 850 INDIVIDUALS WHO WERE NEWLY DIAGNOSED.
4d Other program services (Describe in Schedule O.)
(Expenses $ 3,451,951 including grants of $   ) (Revenue $   )
4e Total program service expensesMediumBullet170,590,615
Form 990 (2015)
Form 990 (2015)
Page 3
Part IV
Checklist of Required Schedules
Yes
No
1
Is the organization described in section 501(c)(3) or 4947(a)(1) (other than a private foundation)? If "Yes," complete Schedule AClick to see attachment.....................
1
Yes
 
2
Is the organization required to complete Schedule B, Schedule of Contributors (see instructions)? Click to see attachment...
2
Yes
 
3
Did the organization engage in direct or indirect political campaign activities on behalf of or in opposition to candidates for public office? If "Yes," complete Schedule C, Part IClick to see attachment.............
3
 
No
4
Section 501(c)(3) organizations. Did the organization engage in lobbying activities, or have a section 501(h) election in effect during the tax year? If "Yes," complete Schedule C, Part IIClick to see attachment..............
4
Yes
 
5
Is the organization a section 501(c)(4), 501(c)(5), or 501(c)(6) organization that receives membership dues, assessments, or similar amounts as defined in Revenue Procedure 98-19? If "Yes," complete Schedule C, Part IIIClick to see attachment.................
5
 
No
6
Did the organization maintain any donor advised funds or any similar funds or accounts for which donors have the right to provide advice on the distribution or investment of amounts in such funds or accounts? If "Yes," complete Schedule D, Part IClick to see attachment..................
6
 
No
7
Did the organization receive or hold a conservation easement, including easements to preserve open space,
the environment, historic land areas, or historic structures? If "Yes," complete Schedule D, Part IIClick to see attachment...
7
 
No
8
Did the organization maintain collections of works of art, historical treasures, or other similar assets? If "Yes," complete Schedule D, Part III Click to see attachment.............
8
 
No
9
Did the organization report an amount in Part X, line 21 for escrow or custodial account liability; serve as a custodian for amounts not listed in Part X; or provide credit counseling, debt management, credit repair, or debt negotiation services? If "Yes," complete Schedule D, Part IVClick to see attachment..............
9
 
No
10
Did the organization, directly or through a related organization, hold assets in temporarily restricted endowments, permanent endowments, or quasi-endowments? If "Yes," complete Schedule D, Part VClick to see attachment......
10
 
No
11
If the organization’s answer to any of the following questions is "Yes," then complete Schedule D, Parts VI, VII, VIII, IX, or X as applicable.
a
Did the organization report an amount for land, buildings, and equipment in Part X, line 10?
If "Yes," complete Schedule D, Part VI.Click to see attachment...................
11a
Yes
 
b
Did the organization report an amount for investments—other securities in Part X, line 12 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VIIClick to see attachment.......
11b
Yes
 
c
Did the organization report an amount for investments—program related in Part X, line 13 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VIIIClick to see attachment.......
11c
 
No
d
Did the organization report an amount for other assets in Part X, line 15 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part IXClick to see attachment............
11d
 
No
e
Did the organization report an amount for other liabilities in Part X, line 25? If "Yes," complete Schedule D, Part XClick to see attachment
11e
Yes
 
f
Did the organization’s separate or consolidated financial statements for the tax year include a footnote that addresses the organization’s liability for uncertain tax positions under FIN 48 (ASC 740)? If "Yes," complete Schedule D, Part XClick to see attachment
11f
Yes
 
12a
Did the organization obtain separate, independent audited financial statements for the tax year?
If "Yes," complete Schedule D, Parts XI and XII Click to see attachment.................
12a
 
No
b
Was the organization included in consolidated, independent audited financial statements for the tax year? If "Yes," and if the organization answered "No" to line 12a, then completing Schedule D, Parts XI and XII is optional Click to see attachment
12b
Yes
 
13
Is the organization a school described in section 170(b)(1)(A)(ii)? If "Yes," complete Schedule E
13
 
No
14a
Did the organization maintain an office, employees, or agents outside of the United States? .....
14a
 
No
b
Did the organization have aggregate revenues or expenses of more than $10,000 from grantmaking, fundraising, business, investment, and program service activities outside the United States, or aggregate foreign investments valued at $100,000 or more? If "Yes," complete Schedule F, Parts I and IV.........Click to see attachment
14b
Yes
 
15
Did the organization report on Part IX, column (A), line 3, more than $5,000 of grants or other assistance to or for any foreign organization? If “Yes,” complete Schedule F, Parts II and IV.....Click to see attachment
15
Yes
 
16
Did the organization report on Part IX, column (A), line 3, more than $5,000 of aggregate grants or other assistance to or for foreign individuals? If “Yes,” complete Schedule F, Parts III and IV...Click to see attachment
16
 
No
17
Did the organization report a total of more than $15,000 of expenses for professional fundraising services on Part IX, column (A), lines 6 and 11e? If "Yes," complete Schedule G, Part I (see instructions) ....Click to see attachment
17
Yes
 
18
Did the organization report more than $15,000 total of fundraising event gross income and contributions on Part VIII, lines 1c and 8a? If "Yes," complete Schedule G, Part II............ Click to see attachment
18
 
No
19
Did the organization report more than $15,000 of gross income from gaming activities on Part VIII, line 9a? If "Yes," complete Schedule G, Part III...................Click to see attachment
19
 
No
20a
Did the organization operate one or more hospital facilities? If "Yes," complete Schedule H....
20a
 
No
b
If "Yes" to line 20a, did the organization attach a copy of its audited financial statements to this return?
20b
 
 
Form 990 (2015)
Form 990 (2015)
Page 4
Part IV
Checklist of Required Schedules (continued)
21
Did the organization report more than $5,000 of grants or other assistance to any domestic organization or domestic government on Part IX, column (A), line 1? If “Yes,” complete Schedule I, Parts I and II.....Click to see attachment
21
Yes
 
22
Did the organization report more than $5,000 of grants or other assistance to or for domestic individuals on Part IX, column (A), line 2? If “Yes,” complete Schedule I, Parts I and III........Click to see attachment
22
Yes
 
23
Did the organization answer "Yes" to Part VII, Section A, line 3, 4, or 5 about compensation of the organization’s current and former officers, directors, trustees, key employees, and highest compensated employees? If "Yes," complete Schedule J....................... Click to see attachment
23
Yes
 
24a
Did the organization have a tax-exempt bond issue with an outstanding principal amount of more than $100,000 as of the last day of the year, that was issued after December 31, 2002? If “Yes,” answer lines 24b through 24d and complete Schedule K. If “No,” go to line 25a...............
24a
 
No
b
Did the organization invest any proceeds of tax-exempt bonds beyond a temporary period exception?...
24b
 
 
c
Did the organization maintain an escrow account other than a refunding escrow at any time during the year
to defease any tax-exempt bonds? ...............
24c
 
 
d
Did the organization act as an "on behalf of" issuer for bonds outstanding at any time during the year?...
24d
 
 
25a
Section 501(c)(3), 501(c)(4), and 501(c)(29) organizations. Did the organization engage in an excess benefit transaction with a disqualified person during the year? If "Yes," complete Schedule L, Part I............
25a
 
No
b
Is the organization aware that it engaged in an excess benefit transaction with a disqualified person in a prior year, and that the transaction has not been reported on any of the organization’s prior Forms 990 or 990-EZ? If "Yes," complete Schedule L, Part I ...................
25b
 
No
26
Did the organization report any amount on Part X, line 5, 6, or 22 for receivables from or payables to any current or former officers, directors, trustees, key employees, highest compensated employees, or disqualified persons? If "Yes," complete Schedule L, Part II ................
26
 
No
27
Did the organization provide a grant or other assistance to an officer, director, trustee, key employee, substantial contributor or employee thereof, a grant selection committee member, or to a 35% controlled entity or family member of any of these persons? If "Yes," complete Schedule L, Part III.........
27
 
No
28
Was the organization a party to a business transaction with one of the following parties (see Schedule L, Part IV instructions for applicable filing thresholds, conditions, and exceptions):
a
A current or former officer, director, trustee, or key employee? If "Yes," complete Schedule L,
Part IV
........................
28a
 
No
b
A family member of a current or former officer, director, trustee, or key employee? If "Yes," complete Schedule L, Part IV.....................
28b
 
No
c
An entity of which a current or former officer, director, trustee, or key employee (or a family member thereof) was an officer, director, trustee, or direct or indirect owner? If "Yes," complete Schedule L, Part IV...
28c
 
No
29
Did the organization receive more than $25,000 in non-cash contributions? If "Yes," complete Schedule M..
29
 
No
30
Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If "Yes," complete Schedule M .............
30
 
No
31
Did the organization liquidate, terminate, or dissolve and cease operations? If "Yes," complete Schedule N, Part I.
31
 
No
32
Did the organization sell, exchange, dispose of, or transfer more than 25% of its net assets? If "Yes," complete Schedule N, Part II ...........
32
 
No
33
Did the organization own 100% of an entity disregarded as separate from the organization under Regulations sections 301.7701-2 and 301.7701-3? If "Yes," complete Schedule R, Part I ........Click to see attachment
33
Yes
 
34
Was the organization related to any tax-exempt or taxable entity? If "Yes," complete Schedule R, Part II, III, or IV, and Part V, line 1.........................Click to see attachment
34
Yes
 
35a
Did the organization have a controlled entity within the meaning of section 512(b)(13)?
35a
Yes
 
b
If ‘Yes’ to line 35a, did the organization receive any payment from or engage in any transaction with a controlled entity within the meaning of section 512(b)(13)? If "Yes," complete Schedule R, Part V, line 2 ...Click to see attachment
35b
Yes
 
36
Section 501(c)(3) organizations. Did the organization make any transfers to an exempt non-charitable related organization? If "Yes," complete Schedule R, Part V, line 2............. Click to see attachment
36
 
No
37
Did the organization conduct more than 5% of its activities through an entity that is not a related organization and that is treated as a partnership for federal income tax purposes? If "Yes," complete Schedule R, Part VIClick to see attachment
37
 
No
38
Did the organization complete Schedule O and provide explanations in Schedule O for Part VI, lines 11b and 19? Note. All Form 990 filers are required to complete Schedule O. ............
38
Yes
 
Form 990 (2015)
Form 990 (2015)
Page 5
Part V
Statements Regarding Other IRS Filings and Tax Compliance
Check if Schedule O contains a response or note to any line in this Part V...........
Yes
No
1a
Enter the number reported in Box 3 of Form 1096 Enter -0- if not applicable ..
1a
238
b
Enter the number of Forms W-2G included in line 1a. Enter -0- if not applicable .
1b
0
c
Did the organization comply with backup withholding rules for reportable payments to vendors and reportable gaming (gambling) winnings to prize winners? ..................
1c
Yes
 
2a
Enter the number of employees reported on Form W-3, Transmittal of Wage and
Tax Statements, filed for the calendar year ending with or within the year covered by this return ..................
2a
315
b
If at least one is reported on line 2a, did the organization file all required federal employment tax returns?
Note. If the sum of lines 1a and 2a is greater than 250, you may be required to e-file (see instructions)
2b
Yes
 
3a
Did the organization have unrelated business gross income of $1,000 or more during the year?...
3a
Yes
 
b
If “Yes,” has it filed a Form 990-T for this year? If “No” to line 3b, provide an explanation in Schedule O...
3b
Yes
 
4a
At any time during the calendar year, did the organization have an interest in, or a signature or other authority over, a financial account in a foreign country (such as a bank account, securities account, or other financial account)? ..
4a
 
No
b
If "Yes," enter the name of the foreign country: MediumBullet
See instructions for filing requirements for FinCEN Form 114, Report of Foreign Bank and Financial Accounts (FBAR).
5a
Was the organization a party to a prohibited tax shelter transaction at any time during the tax year? ..
5a
 
No
b
Did any taxable party notify the organization that it was or is a party to a prohibited tax shelter transaction?
5b
 
No
c
If "Yes," to line 5a or 5b, did the organization file Form 8886-T? ............
5c
 
 
6a
Does the organization have annual gross receipts that are normally greater than $100,000, and did the organization solicit any contributions that were not tax deductible as charitable contributions? ...
6a
 
No
b
If "Yes," did the organization include with every solicitation an express statement that such contributions or gifts were not tax deductible? ......................
6b
 
 
7
Organizations that may receive deductible contributions under section 170(c).
a
Did the organization receive a payment in excess of $75 made partly as a contribution and partly for goods and services provided to the payor? ....................
7a
 
No
b
If "Yes," did the organization notify the donor of the value of the goods or services provided? .....
7b
 
 
c
Did the organization sell, exchange, or otherwise dispose of tangible personal property for which it was required to file Form 8282? .........................
7c
 
No
d
If "Yes," indicate the number of Forms 8282 filed during the year ....
7d
 
e
Did the organization receive any funds, directly or indirectly, to pay premiums on a personal benefit contract?
7e
 
No
f
Did the organization, during the year, pay premiums, directly or indirectly, on a personal benefit contract? ..
7f
 
No
g
If the organization received a contribution of qualified intellectual property, did the organization file Form 8899 as required? ......................
7g
 
 
h
If the organization received a contribution of cars, boats, airplanes, or other vehicles, did the organization file a Form 1098-C? ..........................
7h
 
 
8
Sponsoring organizations maintaining donor advised funds.
Did a donor advised fund maintained by the sponsoring organization have excess business holdings at any time during the year? .........................
8
 
 
9a
Did the sponsoring organization make any taxable distributions under section 4966?...
9a
 
 
b
Did the sponsoring organization make a distribution to a donor, donor advisor, or related person?...
9b
 
 
10
Section 501(c)(7) organizations. Enter:
a
Initiation fees and capital contributions included on Part VIII, line 12 ...
10a
 
b
Gross receipts, included on Form 990, Part VIII, line 12, for public use of club facilities
10b
 
11
Section 501(c)(12) organizations. Enter:
a
Gross income from members or shareholders .........
11a
 
b
Gross income from other sources (Do not net amounts due or paid to other sources against amounts due or received from them.) ..........
11b
 
12a
Section 4947(a)(1) non-exempt charitable trusts. Is the organization filing Form 990 in lieu of Form 1041?
12a
 
 
b
If "Yes," enter the amount of tax-exempt interest received or accrued during the year.
12b
 
13
Section 501(c)(29) qualified nonprofit health insurance issuers.
a
Is the organization licensed to issue qualified health plans in more than one state?
Note.
See the instructions for additional information the organization must report on Schedule O.
13a
 
 
b
Enter the amount of reserves the organization is required to maintain by the states in which the organization is licensed to issue qualified health plans ....
13b
 
c
Enter the amount of reserves on hand ............
13c
 
14a
Did the organization receive any payments for indoor tanning services during the tax year?.....
14a
 
No
b
If "Yes," has it filed a Form 720 to report these payments? If "No," provide an explanation in Schedule O..
14b
 
 
Form 990 (2015)
Form 990 (2015)
Page 6
Part VI
Governance, Management, and Disclosure For each "Yes" response to lines 2 through 7b below, and for a "No" response to lines 8a, 8b, or 10b below, describe the circumstances, processes, or changes in Schedule O. See instructions.
Check if Schedule O contains a response or note to any line in this Part VI ..............
Section A. Governing Body and Management
Yes
No
1a
Enter the number of voting members of the governing body at the end of the tax year
1a
19
If there are material differences in voting rights among members of the governing body, or if the governing body delegated broad authority to an executive committee or similar committee, explain in Schedule O.
b
Enter the number of voting members included in line 1a, above, who are independent
1b
18
2
Did any officer, director, trustee, or key employee have a family relationship or a business relationship with any other officer, director, trustee, or key employee? .................
2
 
No
3
Did the organization delegate control over management duties customarily performed by or under the direct supervision of officers, directors or trustees, or key employees to a management company or other person? .
3
 
No
4
Did the organization make any significant changes to its governing documents since the prior Form 990 was filed? ...........................
4
Yes
 
5
Did the organization become aware during the year of a significant diversion of the organization’s assets? .
5
 
No
6
Did the organization have members or stockholders? ................
6
 
No
7a
Did the organization have members, stockholders, or other persons who had the power to elect or appoint one or more members of the governing body? ....................
7a
 
No
b
Are any governance decisions of the organization reserved to (or subject to approval by) members, stockholders, or persons other than the governing body? ...................
7b
 
No
8
Did the organization contemporaneously document the meetings held or written actions undertaken during the year by the following:
a
The governing body? .......................
8a
Yes
 
b
Each committee with authority to act on behalf of the governing body? ............
8b
Yes
 
9
Is there any officer, director, trustee, or key employee listed in Part VII, Section A, who cannot be reached at the organization’s mailing address? If "Yes," provide the names and addresses in Schedule O.......
9
 
No
Section B. Policies (This Section B requests information about policies not required by the Internal Revenue Code.)
Yes
No
10a
Did the organization have local chapters, branches, or affiliates? ............
10a
Yes
 
b
If "Yes," did the organization have written policies and procedures governing the activities of such chapters, affiliates, and branches to ensure their operations are consistent with the organization's exempt purposes?
10b
Yes
 
11a
Has the organization provided a complete copy of this Form 990 to all members of its governing body before filing the form? ............................
11a
Yes
 
b
Describe in Schedule O the process, if any, used by the organization to review this Form 990. .....
12a
Did the organization have a written conflict of interest policy? If "No," go to line 13.......
12a
Yes
 
b
Were officers, directors, or trustees, and key employees required to disclose annually interests that could give rise to conflicts? ..........................
12b
Yes
 
c
Did the organization regularly and consistently monitor and enforce compliance with the policy? If "Yes," describe in Schedule O how this was done...................
12c
Yes
 
13
Did the organization have a written whistleblower policy? ...............
13
Yes
 
14
Did the organization have a written document retention and destruction policy? .........
14
Yes
 
15
Did the process for determining compensation of the following persons include a review and approval by independent persons, comparability data, and contemporaneous substantiation of the deliberation and decision?
a
The organization’s CEO, Executive Director, or top management official ...........
15a
Yes
 
b
Other officers or key employees of the organization ................
15b
Yes
 
If "Yes" to line 15a or 15b, describe the process in Schedule O (see instructions).
16a
Did the organization invest in, contribute assets to, or participate in a joint venture or similar arrangement with a taxable entity during the year? ......................
16a
 
No
b
If "Yes," did the organization follow a written policy or procedure requiring the organization to evaluate its participation in joint venture arrangements under applicable federal tax law, and take steps to safeguard the organization’s exempt status with respect to such arrangements? ............
16b
 
 
Section C. Disclosure
17
List the States with which a copy of this Form 990 is required to be filedMediumBullet
AL , AK , AR , CA , CT , FL , GA , HI , IL , IN , KS , KY , MD , MA , MI , MN , MS , NH , NJ , NM , NY , OK , OR , PA , RI , SC , TN , UT , VA , WA , WV , WI
18
Section 6104 requires an organization to make its Form 1023 (or 1024 if applicable), 990, and 990-T (501(c)(3)s only) available for public inspection. Indicate how you made these available. Check all that apply.
19
Describe in Schedule O whether (and if so, how) the organization made its governing documents, conflict of interest policy, and financial statements available to the public during the tax year.
20
State the name, address, and telephone number of the person who possesses the organization's books and records:
MediumBulletPRESTON W CAMPBELL MD6931 ARLINGTON ROAD   BETHESDA,MD20814 (301) 951-4422
Form 990 (2015)
Form 990 (2015)
Page 7
Part VII
Compensation of Officers, Directors,Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors
Check if Schedule O contains a response or note to any line in this Part VII ..............
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees
1a Complete this table for all persons required to be listed. Report compensation for the calendar year ending with or within the organization’s tax year.
RoundBullet List all of the organization’s current officers, directors, trustees (whether individuals or organizations), regardless of amount
of compensation. Enter -0- in columns (D), (E), and (F) if no compensation was paid.

RoundBullet List all of the organization’s current key employees, if any. See instructions for definition of "key employee."
RoundBullet List the organization’s five current highest compensated employees (other than an officer, director, trustee or key employee)
who received reportable compensation (Box 5 of Form W-2 and/or Box 7 of Form 1099-MISC) of more than $100,000 from the
organization and any related organizations.

RoundBullet List all of the organization’s former officers, key employees, or highest compensated employees who received more than $100,000
of reportable compensation from the organization and any related organizations.

RoundBullet List all of the organization’s former directors or trustees that received, in the capacity as a former director or trustee of the
organization, more than $10,000 of reportable compensation from the organization and any related organizations.

List persons in the following order: individual trustees or directors; institutional trustees; officers; key employees; highest
compensated employees; and former such persons.
Check this box if neither the organization nor any related organization compensated any current officer, director, or trustee.
(A)
Name and Title
(B)
Average hours per week (list any hours for related organizations below dotted line)
(C)
Position (do not check more than one box, unless person is both an officer and a director/trustee)
(D)
Reportable compensation from the organization (W- 2/1099-MISC)
(E)
Reportable compensation from related organizations (W- 2/1099-MISC)
(F)
Estimated amount of other compensation from the organization and related organizations
Individual Trustee or Director; Institutional Trustee; OfficerInd; Key Employee; Highest compensated employee; FormerOfcrDirectorTrusteeInd;
(1) MICHAEL L BEATTY ESQ......................................................................
TRUSTEE
3.0
.................
3.0
X           0 0 0
(2) RICHARD L DANDURAND......................................................................
VICE CHAIRMAN
5.0
.................
3.0
X           0 0 0
(3) LOUIS DEFALCO......................................................................
TRUSTEE
3.0
.................
3.0
X           0 0 0
(4) RICHARD J GRAY ESQ......................................................................
VICE CHAIRMAN
5.0
.................
3.0
X           0 0 0
(5) CAROLE B GRIEGO MD......................................................................
TRUSTEE
3.0
.................
3.0
X           0 0 0
(6) SUSAN L HOOK......................................................................
TRUSTEE
5.0
.................
3.0
X           0 0 0
(7) CATHERINE C MCLOUD......................................................................
CHAIR
8.0
.................
6.0
X           0 0 0
(8) CHAD T MOORE......................................................................
TRUSTEE
3.0
.................
3.0
X           0 0 0
(9) DAVID A MOUNT......................................................................
TREASURER
3.0
.................
3.0
X           0 0 0
(10) ROBERT H NIEHAUS......................................................................
TRUSTEE
3.0
.................
3.0
X           0 0 0
(11) ERIC OLSON PHD......................................................................
TRUSTEE
3.0
.................
3.0
X           0 0 0
(12) GRAY B SABIN......................................................................
VICE CHAIRMAN
5.0
.................
3.0
X           0 0 0
(13) STEVEN SHAK MD......................................................................
TRUSTEE
3.0
.................
6.0
X           0 0 0
(14) CHARLES J THAYER......................................................................
TRUSTEE
3.0
.................
3.0
X           0 0 0
(15) THEODORE J TORPHY PHD......................................................................
TRUSTEE
3.0
.................
8.0
X           0 0 0
(16) AMY S WEINBERG......................................................................
TRUSTEE
3.0
.................
3.0
X           0 0 0
(17) PAUL W WHETSELL......................................................................
EXECUTIVE VICE CHAIRMAN
5.0
.................
3.0
X           0 0 0
Form 990 (2015)
Form 990 (2015)
Page 8
Part VII
Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees (continued)
(A)
Name and Title
(B)
Average hours per week (list any hours for related organizations below dotted line)
(C)
Position (do not check more than one box, unless person is both an officer and a director/trustee)
(D)
Reportable compensation from the organization (W- 2/1099-MISC)
(E)
Reportable compensation from related organizations (W- 2/1099-MISC)
(F)
Estimated amount of other compensation from the organization and related organizations
Individual Trustee or Director; Institutional Trustee; OfficerInd; Key Employee; Highest compensated employee; FormerOfcrDirectorTrusteeInd;
(18) KC BRYAN WHITE........................................................................
TRUSTEE
5.0
.......................3.0
X           0 0 0
(19) PRESTON CAMPBELL MD........................................................................
PRESIDENT & CEO (AS OF 10/1)
36.0
.......................24.0
X   X       496,970 245,571 212,541
(20) ROBERT BEALL PHD........................................................................
PRESIDENT & CEO (UNTIL 9/30)
36.0
.......................24.0
X   X       1,575,208 779,230 108,896
(21) C RICHARD MATTINGLY........................................................................
EXEC VP & COO
50.0
.......................10.0
    X       2,718,373 0 68,546
(22) VERA H TWIGG........................................................................
EXECUTIVE VP, CFO & SECRETARY
50.0
.......................10.0
    X       499,672 0 107,968
(23) MAUREEN FRASER........................................................................
VP OF FIELD MANAGEMENT
50.0
.......................0.0
      X     275,519 0 45,385
(24) DAVID MCLOUGHLIN........................................................................
SR. VP OF OPERATIONS
35.0
.......................15.0
      X     253,478 108,101 60,349
(25) AMY DEMARIA........................................................................
SR. VP OF COMMUNICATIONS
50.0
.......................0.0
        X   275,520 0 40,990
(26) CHRIS PENLAND PHD........................................................................
VICE PRESIDENT OF RESEARCH
35.0
.......................15.0
        X   139,511 122,427 53,304
(27) WILLIAM SKACH MD........................................................................
SR. VP OF RESEARCH AFFAIRS
12.0
.......................38.0
        X   74,887 233,504 48,493
(28) MARY DWIGHT........................................................................
SVP POLICY & PATIENT ASSIST.
50.0
.......................0.0
        X   265,074 0 66,399
(29) BRUCE MARSHALL MD........................................................................
SR. VP OF CLINICAL AFFAIRS
15.0
.......................35.0
        X   129,754 314,135 32,060


1b Sub-Total................MediumBullet
c Total from continuation sheets to Part VII, Section A....MediumBullet
d Total (add lines 1b and 1c)...........MediumBullet 6,703,966 1,802,968 844,931
2
Total number of individuals (including but not limited to those listed above) who received more than $100,000 of reportable compensation from the organization MediumBullet80
Yes
No
3
Did the organization list any former officer, director or trustee, key employee, or highest compensated employee on line 1a? If "Yes," complete Schedule J for such individual ..............
3
 
No
4
For any individual listed on line 1a, is the sum of reportable compensation and other compensation from the organization and related organizations greater than $150,000? If "Yes," complete Schedule J for such
individual
...........................
4
Yes
 
5
Did any person listed on line 1a receive or accrue compensation from any unrelated organization or individual for services rendered to the organization? If "Yes," complete Schedule J for such person ........
5
 
No
Section B. Independent Contractors
1
Complete this table for your five highest compensated independent contractors that received more than $100,000 of compensation from the organization. Report compensation for the calendar year ending with or within the organization’s tax year.
(A)
Name and business address
(B)
Description of services
(C)
Compensation
SUFIAN PASSAMANO,
712 MAIN STREET SUITE 2130
HOUSTON,TX77002
HOTLINE/PATIENT ASSI 1,380,875
ARAMARK AVENTURA CATERING,
100 NORTH 3RD ST
PHOENIX,AZ85004
CONFERENCE CATERING 1,122,753
SCHANER LUBITZ PLLC,
6931 ARLINGTON ROAD
BETHESDA,MD20814
LEGAL/TRANSACTION 994,427
THREESPOT MEDIA LLC,
806 7TH ST NW
WASHINGTON,DC20001
CONSULTING 911,468
GRANTMAIL DIRECT LTD,
A01-01 15F WORLD TRADE CENTER
NINGBO,0  
CH
PRINTING 652,384
2
Total number of independent contractors (including but not limited to those listed above) who received more than $100,000 of compensation from the organization MediumBullet59
Form 990 (2015)
Form 990 (2015)
Page 9
Part VIII
Statement of Revenue
Check if Schedule O contains a response or note to any line in this Part VIII .............
(A)
Total revenue
(B)
Related or
exempt
function
revenue
(C)
Unrelated
business
revenue
(D)
Revenue
excluded from
tax under sections
512-514
Contributions, Gifts, GrantAmt and OtherAmt Similar Amounts 1a Federated campaigns..1a  
b Membership dues..1b  
c Fundraising events..1c  
d Related organizations1d 86,659,882
e Government grants (contributions)1e  
f All other contributions, gifts, grants, and similar amounts not included above1f 9,248,415
g Noncash contributions included in lines 1a-1f:$  
h Total.Add lines 1a-1f.......MediumBullet 95,908,297
 Program Service RevenueAmt Business Code
2a SCIENTIFIC CONFERENCE 611600 2,060,699 2,060,699    
b TRANSITION SERVICES 541610 155,499 155,499    
c
d
e
f All other program service revenue.        
g Total.Add lines 2a–2f.....MediumBullet 2,216,198
 OtherAmt RevenueAmt 3 Investment income (including dividends, interest, and othersimilar amounts) ..........MediumBullet 67,810,170   -1,476 67,811,646
4 Income from investment of tax-exempt bond proceedsMediumBullet 0      
5 Royalties...........MediumBullet 7,230,863     7,230,863
(ii) Personal (i) Real
6a Gross rents    
b Less: rental expenses    
c Rental income or (loss) 0 0
d Net rental income or (loss)......MediumBullet 0      
(ii) Other (i) Securities
7a Gross amount from sales of assets other than inventory   2,551,737,405
b Less: cost or other basis and sales expenses 2,936 2,578,239,249
c Gain or (loss) -2,936 -26,501,844
d Net gain or (loss).....MediumBullet -26,504,780     -26,504,780
8a Gross income from fundraising events (not including $   of contributions reported on line 1c). See Part IV, line 18 ....
a  
b Less: direct expenses ...b  
c Net income or (loss) from fundraising events..MediumBullet 0    
9a Gross income from gaming activities.
See Part IV, line 19 ...
a  
b Less: direct expenses ...b  
c Net income or (loss) from gaming activities..MediumBullet 0      
10a Gross sales of inventory, less
returns and allowances ..
a  
b Less: cost of goods sold ..b  
c Net income or (loss) from sales of inventory..MediumBullet 0      
Business Code Miscellaneous Revenue
11a LIST RENTAL 533110 249,439     249,439
b INSURANCE CLAIM PROCEEDS 900099 983,127     983,127
c REFUNDED OR CANCELLED GRANTS 900099 565,782 565,782    
d All other revenue ....        
e Total. Add lines 11a–11d ...... MediumBullet 1,798,348
12 Total revenue. See Instructions......MediumBullet 148,459,096 2,781,980 -1,476 49,770,295
Form 990 (2015)
Form 990 (2015)
Page 10
Part IX
Statement of Functional Expenses
Section 501(c)(3) and 501(c)(4) organizations must complete all columns. All other organizations must complete column (A).Check if Schedule O contains a response or note to any line in this Part IX ..............
Do not include amounts reported on lines 6b,
7b, 8b, 9b, and 10b of Part VIII.
(A)
Total expenses
(B)
Program service expenses
(C)
Management and general expenses
(D)
Fundraising expenses
1 Grants and other assistance to domestic organizations and domestic governments. See Part IV, line 21 130,036,670 130,036,670
2 Grants and other assistance to individuals in the United States. See Part IV, line 22 1,839,565 1,839,565
3 Grants and other assistance to governments, organizations, and individuals outside the United States. See Part IV, lines 15 and 16 735,777 735,777
4 Benefits paid to or for members 0  
5 Compensation of current officers, directors, trustees, and key employees .... 6,449,238 4,163,714 1,290,927 994,597
6 Compensation not included above, to disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B) .... 0      
7 Other salaries and wages 20,235,358 12,827,875 4,362,801 3,044,682
8 Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) .... 1,018,805 662,520 207,263 149,022
9 Other employee benefits ....... 2,984,036 1,909,154 617,667 457,215
10 Payroll taxes ........... 1,551,761 959,736 324,237 267,788
11 Fees for services (non-employees):        
a Management ...... 0      
b Legal ......... 720,995 649,960 71,035  
c Accounting ........... 299,022 30,991 268,031  
d Lobbying ........... 469,844 469,844    
e Professional fundraising services. See Part IV, line 17 192,000 192,000
f Investment management fees ...... 5,013,975   5,013,975  
g Other (If line 11g amount exceeds 10% of line 25, column (A) amount, list line 11g expenses on Schedule O) 4,157,288 3,640,198 142,745 374,345
12 Advertising and promotion .... 6,706 3,889 872 1,945
13 Office expenses ....... 818,560 590,087 123,600 104,873
14 Information technology ...... 3,867,178 3,349,834 112,539 404,805
15 Royalties .. 0      
16 Occupancy ........... 1,138,748 841,192 169,822 127,734
17 Travel ............ 885,874 762,884 51,620 71,370
18 Payments of travel or entertainment expenses for any federal, state, or local public officials . 0      
19 Conferences, conventions, and meetings .... 4,122,590 3,848,113 80,947 193,530
20 Interest ........... 0      
21 Payments to affiliates ....... 0      
22 Depreciation, depletion, and amortization .. 500,221 342,076 91,462 66,683
23 Insurance ... 355,238 264,491 58,986 31,761
24 Other expenses. Itemize expenses not covered above (List miscellaneous expenses in line 24e. If line 24e amount exceeds 10% of line 25, column (A) amount, list line 24e expenses on Schedule O.)
a DIRECT MAIL PRINTING 1,890,346 536,858   1,353,488
b DIRECT MAIL POSTAGE 1,301,504 369,627   931,877
c MEDICAL QUALITY IMPROVEMENT 802,991 802,991    
d TRAINING 510,125 310,454 77,050 122,621
e All other expenses 1,082,346 642,115 209,876 230,355
25 Total functional expenses. Add lines 1 through 24e 192,986,761 170,590,615 13,275,455 9,120,691
26 Joint costs. Complete this line only if the organization reported in column (B) joint costs from a combined educational campaign and fundraising solicitation. Check here MediumBullet if following SOP 98-2 (ASC 958-720). 4,854,387 1,378,646   3,475,741
Form 990 (2015)
Form 990 (2015)
Page 11
Part X
Balance Sheet
Check if Schedule O contains a response or note to any line in this Part IX ..............
(A)
Beginning of year
(B)
End of year
Assets 1 Cash–non-interest-bearing ........ 0 1 0
2 Savings and temporary cash investments ......... 200,542,178 2 284,143,149
3 Pledges and grants receivable, net ...... 10,323,508 3 10,867,532
4 Accounts receivable, net ............. 50,121,025 4 11,119,153
5 Loans and other receivables from current and former officers, directors, trustees, key employees, and highest compensated employees. Complete Part II of Schedule L
0 5 0
6 Loans and other receivables from other disqualified persons (as defined under section 4958(f)(1)), persons described in section 4958(c)(3)(B), and contributing employers and sponsoring organizations of section 501(c)(9) voluntary employees' beneficiary organizations (see instructions) Complete Part II of Schedule L
0 6 0
7 Notes and loans receivable, net .... 0 7 0
8 Inventories for sale or use ........ 265,490 8 212,895
9 Prepaid expenses and deferred charges ...... 923,653 9 956,650
10a Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D 10a 7,611,994
b Less: accumulated depreciation 10b 4,459,392 2,887,521 10c 3,152,602
11 Investments—publicly traded securities . 2,473,908,461 11 1,769,524,290
12 Investments—other securities. See Part IV, line 11 ..... 1,176,671,743 12 1,716,447,700
13 Investments—program-related. See Part IV, line 11 .. 0 13 0
14 Intangible assets ............... 0 14 0
15 Other assets. See Part IV, line 11 ........... 7,045,114 15 7,061,332
16 Total assets. Add lines 1 through 15 (must equal line 34)... 3,922,688,693 16 3,803,485,303
Liabilities 17 Accounts payable and accrued expenses ..... 16,831,621 17 18,195,708
18 Grants payable ... 28,741,961 18 44,046,759
19 Deferred revenue ......... 3,325,808 19 3,422,898
20 Tax-exempt bond liabilities ......... 0 20 0
21 Escrow or custodial account liability. Complete Part IV of Schedule D 0 21 0
22 Loans and other payables to current and former officers, directors, trustees, key employees, highest compensated employees, and disqualified
persons. Complete Part II of Schedule L.. 0 22 0
23 Secured mortgages and notes payable to unrelated third parties .. 0 23 0
24 Unsecured notes and loans payable to unrelated third parties .. 0 24 0
25 Other liabilities (including federal income tax, payables to related third parties, and other liabilities not included on lines 17-24). Complete Part X of Schedule D 59,426,357 25 58,395,410
26 Total liabilities. Add lines 17 through 25.. 108,325,747 26 124,060,775
Net Assets or Fund Balance Organizations that follow SFAS 117 (ASC 958), check here MediumBullet and complete lines 27 through 29, and lines 33 and 34.
27 Unrestricted net assets 3,796,361,145 27 3,664,492,149
28 Temporarily restricted net assets ........... 14,083,576 28 11,255,303
29 Permanently restricted net assets 3,918,225 29 3,677,076
Organizations that do not follow SFAS 117 (ASC 958), check here MediumBullet and complete lines 30 through 34.
30 Capital stock or trust principal, or current funds .....   30  
31 Paid-in or capital surplus, or land, building or equipment fund ...   31  
32 Retained earnings, endowment, accumulated income, or other funds   32  
33 Total net assets or fund balances ........... 3,814,362,946 33 3,679,424,528
34 Total liabilities and net assets/fund balances ........ 3,922,688,693 34 3,803,485,303
Form 990 (2015)
Form 990 (2015)
Page 12
Part XI
Reconcilliation of Net Assets
Check if Schedule O contains a response or note to any line in this Part XI ..............
1
Total revenue (must equal Part VIII, column (A), line 12) ............
1
148,459,096
2
Total expenses (must equal Part IX, column (A), line 25) ............
2
192,986,761
3
Revenue less expenses. Subtract line 2 from line 1 ..............
3
-44,527,665
4
Net assets or fund balances at beginning of year (must equal Part X, line 33, column (A)) ..
4
3,814,362,946
5
Net unrealized gains (losses) on investments ...............
5
-90,410,753
6
Donated services and use of facilities .................
6
 
7
Investment expenses .....................
7
 
8
Prior period adjustments .....................
8
 
9
Other changes in net assets or fund balances (explain in Schedule O) ........
9
 
10
Net assets or fund balances at end of year. Combine lines 3 through 9 (must equal Part X, line 33, column (B))
10
3,679,424,528
Part XII
Financial Statements and Reporting
Check if Schedule O contains a response or note to any line in this Part XII .............
Yes
No
1
Accounting method used to prepare the Form 990:  
If the organization changed its method of accounting from a prior year or checked "Other," explain in
Schedule O.
2a
Were the organization’s financial statements compiled or reviewed by an independent accountant?
2a
 
No
If ‘Yes,’ check a box below to indicate whether the financial statements for the year were compiled or reviewed on a separate basis, consolidated basis, or both:
b
Were the organization’s financial statements audited by an independent accountant?
2b
Yes
 
If ‘Yes,’ check a box below to indicate whether the financial statements for the year were audited on a separate basis, consolidated basis, or both:
c
If "Yes," to line 2a or 2b, does the organization have a committee that assumes responsibility for oversight of the audit, review, or compilation of its financial statements and selection of an independent accountant?
2c
Yes
 
If the organization changed either its oversight process or selection process during the tax year, explain in Schedule O.
3a
As a result of a federal award, was the organization required to undergo an audit or audits as set forth in the Single Audit Act and OMB Circular A-133?
3a
 
No
b
If "Yes," did the organization undergo the required audit or audits? If the organization did not undergo the required audit or audits, explain why in Schedule O and describe any steps taken to undergo such audits.
3b
 
 
Form 990 (2015)
Form 990 (2015)
Additional Data


Software ID:  
Software Version:  
Form 990, Special Condition Description:
Special Condition Description
SCHEDULE A
(Form 990 or 990EZ)

Department of the Treasury
Internal Revenue Service
Public Charity Status and Public Support
Complete if the organization is a section 501(c)(3) organization or a section 4947(a)(1) nonexempt charitable trust.
right arrow Attach to Form 990 or Form 990-EZ.
right arrow Information about Schedule A (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
Open to Public
Inspection
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Part I
Reason for Public Charity Status (All organizations must complete this part.) See instructions.
The organization is not a private foundation because it is: (For lines 1 through 11, check only one box.)
1
2
3
4


5
6
7
8
9
10
11
a
b
c
d
e
f
Enter the number of supported organizations ..............  

g
Provide the following information about the supported organization(s).
(i)Name of supported organization (ii) EIN (iii) Type of organization (described on lines 1- 9 above (see instructions)) (iv) Is the organization listed in your governing document? (v) Amount of monetary support (see instructions) (vi) Amount of other support (see instructions)
Yes No
Total      

For Paperwork Reduction Act Notice, see the Instructions for
Form 990 or 990-EZ.
Cat. No. 11285F
Schedule A (Form 990 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
Page 2
Part II
Support Schedule for Organizations Described in Sections 170(b)(1)(A)(iv) and 170(b)(1)(A)(vi)
(Complete only if you checked the box on line 5, 7, or 8 of Part I or if the organization failed to qualify under Part III. If the organization fails to qualify under the tests listed below, please complete Part III.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2011 (b) 2012 (c) 2013 (d) 2014 (e) 2015 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any unusual grants.) .... 101,016,043 193,893,253 279,115,653 3,285,132,614 95,908,297 3,955,065,860
2 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.......           0
3 The value of services or facilities furnished by a governmental unit to the organization without charge..           0
4 Total. Add lines 1 through 3 101,016,043 193,893,253 279,115,653 3,285,132,614 95,908,297 3,955,065,860
5 The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f).. 0
6 Public support. Subtract line 5 from line 4. 3,955,065,860
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2011 (b) 2012 (c) 2013 (d) 2014 (e) 2015 (f) Total
7 Amounts from line 4.. 101,016,043 193,893,253 279,115,653 3,285,132,614 95,908,297 3,955,065,860
8 Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... 4,888,930 14,145,772 17,054,431 54,160,127 75,041,033 165,290,293
9 Net income from unrelated business activities, whether or not the business is regularly carried on..           0
10 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. 576,265 480,632 449,051 341,467 1,232,566 3,079,981
11 Total support. Add lines 7 through 10. 4,123,436,134
12
12
63,484,498
13
First five years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization, check this box and stop here........................................right arrow
Section C. Computation of Public Support Percentage
14
14
95.917 %
15
15
97.650 %
16a
b
17a
b
18
Private foundation. If the organization did not check a box on line 13, 16a, 16b, 17a, or 17b, check this box and see
instructions ..................................................... right arrow
Schedule A (Form 990 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
Page 3
Part III
Support Schedule for Organizations Described in Section 509(a)(2)
(Complete only if you checked the box on line 9 of Part I or if the organization failed to qualify under Part II. If the organization fails to qualify under the tests listed below, please complete Part II.)
Section A. Public Support
Calendar year (or fiscal year beginning in) right arrow (a) 2011 (b) 2012 (c) 2013 (d) 2014 (e) 2015 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .            
2 Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose......            
3 Gross receipts from activities that are not an unrelated trade or business under section 513...            
4 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf...            
5 The value of services or facilities furnished by a governmental unit to the organization without charge..            
6 Total. Add lines 1 through 5.            
7a Amounts included on lines 1, 2, and 3 received from disqualified persons...            
b Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year.            
c Add lines 7a and 7b..            
8 Public support. (Subtract line 7c from line 6.)  
Section B. Total Support
Calendar year (or fiscal year beginning in) right arrow (a) 2011 (b) 2012 (c) 2013 (d) 2014 (e) 2015 (f) Total
9 Amounts from line 6...            
10a Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..            
b Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975.            
c Add lines 10a and 10b.            
11 Net income from unrelated business activities not included in line 10b, whether or not the business is regularly carried on.            
12 Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) ..            
13 Total support. (Add lines 9, 10c, 11, and 12.)..            
14
Section C. Computation of Public Support Percentage
15
15
 
16
16
 
Section D. Computation of Investment Income Percentage
17
17
 
18
18
 
19a
b
20
Schedule A (Form 990 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
Page 4
Part IV
Supporting Organizations
(Complete only if you checked a box on line 11 of Part I. If you checked 11a of Part I, complete Sections A and B. If you checked 11b of Part I, complete Sections A and C. If you checked 11c of Part I, complete Sections A, D, and E. If you checked 11d of Part I, complete Sections A and D, and complete Part V.)
Section A. All Supporting Organizations
Yes
No
1
Are all of the organization’s supported organizations listed by name in the organization’s governing documents?
If "No," describe in Part VI how the supported organizations are designated. If designated by class or purpose,
describe the designation. If historic and continuing relationship, explain.
1
 
 
2
Did the organization have any supported organization that does not have an IRS determination of status under section 509(a)(1) or (2)? If "Yes," explain in Part VI how the organization determined that the supported organization was described in section 509(a)(1) or (2).
2
 
 
3a
Did the organization have a supported organization described in section 501(c)(4), (5), or (6)? If "Yes," answer (b) and (c) below.
3a
 
 
b
Did the organization confirm that each supported organization qualified under section 501(c)(4), (5), or (6) and satisfied the public support tests under section 509(a)(2)? If "Yes," describe in Part VI when and how the organization made the determination.
3b
 
 
c
Did the organization ensure that all support to such organizations was used exclusively for section 170(c)(2)(B) purposes? If "Yes," explain in Part VI what controls the organization put in place to ensure such use.
3c
 
 
4a
Was any supported organization not organized in the United States ("foreign supported organization")? If “Yes” and if you checked 11a or 11b in Part I, answer (b) and (c) below.
4a
 
 
b
Did the organization have ultimate control and discretion in deciding whether to make grants to the foreign supported organization? If “Yes,” describe in Part VI how the organization had such control and discretion despite being controlled or supervised by or in connection with its supported organizations.
4b
 
 
c
Did the organization support any foreign supported organization that does not have an IRS determination under sections 501(c)(3) and 509(a)(1) or (2)? If “Yes,” explain in Part VI what controls the organization used to ensure that all support to the foreign supported organization was used exclusively for section 170(c)(2)(B) purposes.
4c
 
 
5a
Did the organization add, substitute, or remove any supported organizations during the tax year? If “Yes,” answer (b) and (c) below (if applicable). Also, provide detail in Part VI, including (i) the names and EIN numbers of the supported organizations added, substituted, or removed; (ii) the reasons for each such action; (iii) the authority under the organization's organizing document authorizing such action; and (iv) how the action was accomplished (such as by amendment to the organizing document).
5a
 
 
b
Type I or Type II only. Was any added or substituted supported organization part of a class already designated in the organization's organizing document?
5b
 
 
c
Substitutions only. Was the substitution the result of an event beyond the organization's control?
5c
 
 
6
Did the organization provide support (whether in the form of grants or the provision of services or facilities) to anyone other than (i) its supported organizations, (ii) individuals that are part of the charitable class benefited by one or more of its supported organizations, or (iii) other supporting organizations that also support or benefit one or more of the filing organization’s supported organizations? If “Yes,” provide detail in Part VI.
6
 
 
7
Did the organization provide a grant, loan, compensation, or other similar payment to a substantial contributor (defined in section 4958(c)(3)(C)), a family member of a substantial contributor, or a 35% controlled entity with regard to a substantial contributor? If “Yes,” complete Part I of Schedule L (Form 990 or 990-EZ) .
7
 
 
8
Did the organization make a loan to a disqualified person (as defined in section 4958) not described in line 7? If “Yes,” complete Part I of Schedule L (Form 990 or 990-EZ).
8
 
 
9a
Was the organization controlled directly or indirectly at any time during the tax year by one or more disqualified persons as defined in section 4946 (other than foundation managers and organizations described in section 509(a)(1) or (2))? If “Yes,” provide detail in Part VI.
9a
 
 
b
Did one or more disqualified persons (as defined in line 9a) hold a controlling interest in any entity in which the supporting organization had an interest? If “Yes,” provide detail in Part VI.
9b
 
 
c
Did a disqualified person (as defined in line 9a) have an ownership interest in, or derive any personal benefit from, assets in which the supporting organization also had an interest? If “Yes,” provide detail in Part VI.
9c
 
 
10a
Was the organization subject to the excess business holdings rules of section 4943 because of section 4943(f) (regarding certain Type II supporting organizations, and all Type III non-functionally integrated supporting organizations)? If “Yes,” answer line 10b below.
10a
 
 
b
Did the organization have any excess business holdings in the tax year? (Use Schedule C, Form 4720, to determine whether the organization had excess business holdings).
10b
 
 
Schedule A (Form 990 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
Page 5
Part IV
Supporting Organizations (continued)
Yes
No
11
Has the organization accepted a gift or contribution from any of the following persons?
a
A person who directly or indirectly controls, either alone or together with persons described in (b) and (c) below, the governing body of a supported organization?
11a
 
 
b
A family member of a person described in (a) above?
11b
 
 
c
A 35% controlled entity of a person described in (a) or (b) above? If “Yes” to a, b, or c, provide detail in Part VI.
11c
 
 
Section B. Type I Supporting Organizations
Yes
No
1
Did the directors, trustees, or membership of one or more supported organizations have the power to regularly appoint or elect at least a majority of the organization’s directors or trustees at all times during the tax year? If “No,” describe in Part VI how the supported organization(s) effectively operated, supervised, or controlled the organization’s activities. If the organization had more than one supported organization, describe how the powers to appoint and/or remove directors or trustees were allocated among the supported organizations and what conditions or restrictions, if any, applied to such powers during the tax year.
1
 
 
2
Did the organization operate for the benefit of any supported organization other than the supported organization(s) that operated, supervised, or controlled the supporting organization? If “Yes,” explain in Part VI how providing such benefit carried out the purposes of the supported organization(s) that operated, supervised or controlled the supporting organization.
2
 
 
Section C. Type II Supporting Organizations
Yes
No
1
Were a majority of the organization’s directors or trustees during the tax year also a majority of the directors or trustees of each of the organization’s supported organization(s)? If “No,” describe in Part VI how control or management of the supporting organization was vested in the same persons that controlled or managed the supported organization(s).
1
 
 
Section D. All Type III Supporting Organizations
Yes
No
1
Did the organization provide to each of its supported organizations, by the last day of the fifth month of the organization’s tax year, (i) a written notice describing the type and amount of support provided during the prior tax year, (ii) a copy of the Form 990 that was most recently filed as of the date of notification, and (iii) copies of the organization’s governing documents in effect on the date of notification, to the extent not previously provided?
1
 
 
2
Were any of the organization’s officers, directors, or trustees either (i) appointed or elected by the supported organization(s) or (ii) serving on the governing body of a supported organization? If "No," explain in Part VI how the organization maintained a close and continuous working relationship with the supported organization(s).
2
 
 
3
By reason of the relationship described in (2), did the organization’s supported organizations have a significant voice in the organization’s investment policies and in directing the use of the organization’s income or assets at all times during the tax year? If "Yes," describe in Part VI the role the organization’s supported organizations played in this regard.
3
 
 
Section E. Type III Functionally-Integrated Supporting Organizations
1
Check the box next to the method that the organization used to satisfy the Integral Part Test during the year (see instructions):
a
b
c
2
Activities Test. Answer (a) and (b) below.
Yes
No
a
Did substantially all of the organization’s activities during the tax year directly further the exempt purposes of the supported organization(s) to which the organization was responsive? If "Yes," then in Part VI identify those supported organizations and explain how these activities directly furthered their exempt purposes, how the organization was responsive to those supported organizations, and how the organization determined that these activities constituted substantially all of its activities.
2a
 
 
b
Did the activities described in (a) constitute activities that, but for the organization’s involvement, one or more of the organization’s supported organization(s) would have been engaged in? If "Yes," explain in Part VI the reasons for the organization’s position that its supported organization(s) would have engaged in these activities but for the organization’s involvement.
2b
 
 
3
Parent of Supported Organizations. Answer (a) and (b) below.
a
Did the organization have the power to regularly appoint or elect a majority of the officers, directors, or trustees of each of the supported organizations? Provide details in Part VI.
3a
 
 
b
Did the organization exercise a substantial degree of direction over the policies, programs and activities of each of its supported organizations? If "Yes," describe in Part VI. the role played by the organization in this regard.
3b
 
 
Schedule A (Form 990 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
Page 6
Part V
Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations
1
Section A - Adjusted Net Income (A) Prior Year (B) Current Year
(optional)
1 Net short-term capital gain 1    
2 Recoveries of prior-year distributions 2    
3 Other gross income (see instructions) 3    
4 Add lines 1 through 3 4    
5 Depreciation and depletion 5    
6 Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) 6    
7 Other expenses (see instructions) 7    
8 Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) 8    

Section B - Minimum Asset Amount (A) Prior Year (B) Current Year
(optional)
1 Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): 1
a Average monthly value of securities 1a    
b Average monthly cash balances 1b    
c Fair market value of other non-exempt-use assets 1c    
d Total (add lines 1a, 1b, and 1c) 1d    
e Discount claimed for blockage or other factors
(explain in detail in Part VI):  
2 Acquisition indebtedness applicable to non-exempt use assets 2    
3 Subtract line 2 from line 1d 3    
4 Cash deemed held for exempt use. Enter 1-1/2% of line 3 (for greater amount, see instructions). 4    
5 Net value of non-exempt-use assets (subtract line 4 from line 3) 5    
6 Multiply line 5 by .035 6    
7 Recoveries of prior-year distributions 7    
8 Minimum Asset Amount (add line 7 to line 6) 8    

Section C - Distributable Amount Current Year
1 Adjusted net income for prior year (from Section A, line 8, Column A) 1  
2 Enter 85% of line 1 2  
3 Minimum asset amount for prior year (from Section B, line 8, Column A) 3  
4 Enter greater of line 2 or line 3 4  
5 Income tax imposed in prior year 5  
6 Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) 6  
7
Schedule A (Form 990 or 990-EZ) 2015

Schedule A (Form 990 or 990-EZ) 2015
Page 7
Part V
Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations (continued)
Section D - Distributions Current Year
1 Amounts paid to supported organizations to accomplish exempt purposes  
2 Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in
excess of income from activity
 
3 Administrative expenses paid to accomplish exempt purposes of supported organizations  
4 Amounts paid to acquire exempt-use assets  
5 Qualified set-aside amounts (prior IRS approval required)  
6 Other distributions (describe in Part VI). See instructions  
7Total annual distributions. Add lines 1 through 6.  
8 Distributions to attentive supported organizations to which the organization is responsive (provide
details in Part VI). See instructions
 
9 Distributable amount for 2015 from Section C, line 6  
10 Line 8 amount divided by Line 9 amount  

Section E - Distribution Allocations (see instructions) (i)
Excess Distributions
(ii)
Underdistributions
Pre-2015
(iii)
Distributable
Amount for 2015
1 Distributable amount for 2015 from Section C, line
6
 
2 Underdistributions, if any, for years prior to 2015
(reasonable cause required--see instructions)
 
3 Excess distributions carryover, if any, to 2015:
a
b
c
d From 2013.......  
e From 2014.......  
fTotal of lines 3a through e  
g Applied to underdistributions of prior years  
h Applied to 2015 distributable amount  
i Carryover from 2010 not applied (see
instructions)
j Remainder. Subtract lines 3g, 3h, and 3i from 3f.  
4Distributions for 2015 from Section D, line 7:
$  
a Applied to underdistributions of prior years  
b Applied to 2015 distributable amount  
c Remainder. Subtract lines 4a and 4b from 4.  
5 Remaining underdistributions for years prior to
2015, if any. Subtract lines 3g and 4a from line 2
(if amount greater than zero, see instructions)
 
6 Remaining underdistributions for 2015. Subtract
lines 3h and 4b from line 1 (if amount greater than
zero, see instructions)
 
7 Excess distributions carryover to 2016. Add lines
3j and 4c.
 
8 Breakdown of line 7:
a
b
c Excess from 2013.......  
d From 2014.......  
e From 2015.......  
Schedule A (Form 990 or 990-EZ) (2015)

Schedule A (Form 990 or 990-EZ) 2015
Page 8
Part VI
Supplemental Information. Provide the explanations required by Part II, line 10; Part II, line 17a or 17b; Part III, line 12; Part IV, Section A, lines 1, 2, 3b, 3c, 4b, 4c, 5a, 6, 9a, 9b, 9c, 11a, 11b, and 11c; Part IV, Section B, lines 1 and 2; Part IV, Section C, line 1; Part IV, Section D, lines 2 and 3; Part IV, Section E, lines 1c, 2a, 2b, 3a and 3b; Part V, line 1; Part V, Section B, line 1e; Part V Section D, lines 5, 6, and 8; and Part V, Section E, lines 2, 5, and 6. Also complete this part for any additional information. (See instructions).
Facts And Circumstances Test
 
Return Reference Explanation
SCHEDULE A, PART II - OTHER INCOME THE FOUNDATION FOSTERS COLLABORATION WITHIN THE SCIENTIFIC COMMUNITY BY HOSTING A LARGE SCIENTIFIC CONFERENCE PROVIDING A FORUM FOR RESEARCHERS AND CAREGIVERS TO SHARE THEIR PRACTICES AND INVESTIGATE RESULTS WITH ONE ANOTHER. FEES FOR ATTENDANCE AT THIS CONFERENCE ARE REPORTED ON LINE 12. TRANSITION SERVICES AMOUNT REPRESENTS FEES EARNED FOR TEMPORARY INFORMATION TECHNOLOGY AND TELECOMMUNICATIONS SERVICES PROVIDED BY THE FOUNDATION IN CONNECTION WITH THE SALE OF PHARMACY OPERATIONS IN DECEMBER 2012.
Schedule A (Form 990 or 990-EZ) 2015


Additional Data


Software ID:  
Software Version:  
Schedule B
(Form 990, 990-EZ,
or 990-PF)
Department of the Treasury
Internal Revenue Service
Schedule of Contributors
Arrow Bullet Attach to Form 990, 990-EZ, or 990-PF.
Arrow Bullet Information about Schedule B (Form 990, 990-EZ, or 990-PF) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Organization type (check one):
Filers of:
Section:
Form 990 or 990-EZ





Form 990-PF




Check if your organization is covered by the General Rule or a Special Rule.  
Note. Only a section 501(c)(7), (8), or (10) organization can check boxes for both the General Rule and a Special Rule. See instructions.
General Rule
Special Rules
......... Arrow Bullet $  
Caution. An organization that is not covered by the General Rule and/or the Special Rules does not file Schedule B (Form 990,
990-EZ, or 990-PF), but it must answer “No” on Part IV, line 2, of its Form 990; or check the box on line H of its
Form 990-EZ or on its Form 990PF, Part I, line 2, to certify that it does not meet the filing requirements of Schedule B (Form 990,
990-EZ, or 990-PF).
For Paperwork Reduction Act Notice, see the Instructions
for Form 990, 990-EZ, or 990-PF.
Cat. No. 30613XSchedule B (Form 990, 990-EZ, or 990-PF) (2015)
Schedule B (Form 990, 990-EZ, or 990-PF) (2015) Page 2
Name of organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number
13-1930701
Part I
Contributors (see instructions). Use duplicate copies of Part I if additional space is needed.
(a)
No.
(b)
Name, address, and ZIP + 4
(c)
Total contributions
(d)
Type of contribution
RESTRICTED
 
 

   
 
 
  ,    

$ RESTRICTED


(Complete Part II for noncash contributions.)
(a)
No.
(b)
Name, address, and ZIP + 4
(c)
Total contributions
(d)
Type of contribution
 
 
 

   
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.
(b)
Name, address, and ZIP + 4
(c)
Total contributions
(d)
Type of contribution
 
 
 

   
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.
(b)
Name, address, and ZIP + 4
(c)
Total contributions
(d)
Type of contribution
 
 
 

   
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.
(b)
Name, address, and ZIP + 4
(c)
Total contributions
(d)
Type of contribution
 
 
 

   
 
 

$  


(Complete Part II for noncash contributions.)
(a)
No.
(b)
Name, address, and ZIP + 4
(c)
Total contributions
(d)
Type of contribution
 
 
 

   
 
 

$  


(Complete Part II for noncash contributions.)
Schedule B (Form 990, 990-EZ, or 990-PF) (2015)
Schedule B (Form 990, 990-EZ, or 990-PF) (2015)
Page 3
Name of organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Part II
Noncash Property (see instructions). Use duplicate copies of Part II if additional space is needed.
(a)
No.from Part I
(b)
Description of noncash property given
(c)
FMV (or estimate)
(see instructions)
(d)
Date received
 
$    
(a)
No.from Part I
(b)
Description of noncash property given
(c)
FMV (or estimate)
(see instructions)
(d)
Date received
 
$    
(a)
No.from Part I
(b)
Description of noncash property given
(c)
FMV (or estimate)
(see instructions)
(d)
Date received
 
$    
(a)
No.from Part I
(b)
Description of noncash property given
(c)
FMV (or estimate)
(see instructions)
(d)
Date received
 
$    
(a)
No.from Part I
(b)
Description of noncash property given
(c)
FMV (or estimate)
(see instructions)
(d)
Date received
 
$    
(a)
No.from Part I
(b)
Description of noncash property given
(c)
FMV (or estimate)
(see instructions)
(d)
Date received
 
$    
Schedule B (Form 990, 990-EZ, or 990-PF) (2015)
Schedule B (Form 990, 990-EZ, or 990-PF) (2015)
Page 4
Name of organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Part III
Exclusively religious, charitable, etc., contributions to organizations described in section 501(c)(7), (8), or (10) that total more than $1,000 for the year from any one contributor. Complete columns (a) through (e) and the following line entry. For organizations completing Part III, enter the total of exclusively religious, charitable, etc., contributions of $1,000 or less for the year. (Enter this information once. See instructions.) Arrow Bullet$  
Use duplicate copies of Part III if additional space is needed.
(a)
No.from Part I
(b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No.from Part I
(b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No.from Part I
(b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
(a)
No.from Part I
(b) Purpose of gift (c) Use of gift (d) Description of how gift is held
 
(e) Transfer of gift
Transferee's name, address, and ZIP 4 Relationship of transferor to transferee
 
 
     
 
Schedule B (Form 990, 990-EZ, or 990-PF) (2015)

Additional Data


Software ID:  
Software Version:  
SCHEDULE C
(Form 990 or 990-EZ)

Department of the Treasury
Internal Revenue Service
Political Campaign and Lobbying Activities

For Organizations Exempt From Income Tax Under section 501(c) and section 527
SchCMd Bullet Complete if the organization is described below. SchCMd Bullet Attach to Form 990 or Form 990-EZ.
SchCMd BulletInformation about Schedule C (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
Open to Public
Inspection
If the organization answered "Yes" on Form 990, Part IV, Line 3, or Form 990-EZ, Part V, line 46 (Political Campaign Activities), then
Round Bullet Section 501(c)(3) organizations: Complete Parts I-A and B. Do not complete Part I-C.
Round Bullet Section 501(c) (other than section 501(c)(3)) organizations: Complete Parts I-A and C below. Do not complete Part I-B.
Round Bullet Section 527 organizations: Complete Part I-A only.
If the organization answered "Yes" on Form 990, Part IV, Line 4, or Form 990-EZ, Part VI, line 47 (Lobbying Activities), then
Round Bullet Section 501(c)(3) organizations that have filed Form 5768 (election under section 501(h)): Complete Part II-A. Do not complete Part II-B.
Round Bullet Section 501(c)(3) organizations that have NOT filed Form 5768 (election under section 501(h)): Complete Part II-B. Do not complete Part II-A.
If the organization answered "Yes" on Form 990, Part IV, Line 5 (Proxy Tax) (see separate instructions) or Form 990-EZ, Part V, line 35c (Proxy Tax) (see separate instructions), then
Round Bullet Section 501(c)(4), (5), or (6) organizations: Complete Part III.
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Part I-A
Complete if the organization is exempt under section 501(c) or is a section 527 organization.

1
Provide a description of the organization’s direct and indirect political campaign activities in Part IV.
2
Political expenditures ......................................................................................................................SchCMd Bullet
$  
3
Volunteer hours .............................................................................................................................
 

Part I-B
Complete if the organization is exempt under section 501(c)(3).
1
Enter the amount of any excise tax incurred by the organization under section 4955 ................................SchCMd Bullet
$  
2
Enter the amount of any excise tax incurred by organization managers under section 4955 .......................SchCMd Bullet
$  
3
If the organization incurred a section 4955 tax, did it file Form 4720 for this year? .........................................
4a
Was a correction made? ......................................................................................................................
b
If "Yes," describe in Part IV.
Part I-C
Complete if the organization is exempt under section 501(c), except section 501(c)(3).
1
Enter the amount directly expended by the filing organization for section 527 exempt function activities ..... SchCMd Bullet
$  
2
Enter the amount of the filing organization's funds contributed to other organizations for section 527 exempt function activities ............................................................................................................................SchCMd Bullet

$  
3
Total exempt function expenditures. Add lines 1 and 2. Enter here and on Form 1120-POL, line 17b...........SchCMd Bullet

$  
4
Did the filing organization file Form 1120-POL for this year? ...................................................................
5
Enter the names, addresses and employer identification number (EIN) of all section 527 political organizations to which the filing
organization made payments. For each organization listed, enter the amount paid from the filing organization’s funds. Also enter the amount of political contributions received that were promptly and directly delivered to a separate political organization, such as a separate segregated fund or a political action committee (PAC). If additional space is needed, provide information in Part IV.
(a) Name (b) Address (c) EIN (d) Amount paid from filing organization's funds. If none, enter -0-. (e) Amount of political contributions received and promptly and directly delivered to a separate political organization. If none, enter -0-.
1
2
3
4
5
6
For Paperwork Reduction Act Notice, see the instructions for Form 990 or 990-EZ.
Cat. No. 50084S
Schedule C (Form 990 or 990-EZ) 2015

Schedule C (Form 990 or 990-EZ) 2015
Page 2
Part II-A
Complete if the organization is exempt under section 501(c)(3) and filed Form 5768 (election under section 501(h)).
A Check SchCMd Bulletexpenses, and share of excess lobbying expenditures).
B Check SchCMd Bullet
Limits on Lobbying Expenditures
(The term "expenditures" means amounts paid or incurred.)
(a) Filing
organization's
totals
(b) Affiliated group totals
1a Total lobbying expenditures to influence public opinion (grass roots lobbying) ...............................................    
b Total lobbying expenditures to influence a legislative body (direct lobbying) ...........................................    
c Total lobbying expenditures (add lines 1a and 1b) .......................................................................    
d Other exempt purpose expenditures .........................................................................................    
e Total exempt purpose expenditures (add lines 1c and 1d) ....................................................................    
f Lobbying nontaxable amount. Enter the amount from the following table in both
columns.
   
If the amount on line 1e, column (a) or (b) is:The lobbying nontaxable amount is:
Not over $500,00020% of the amount on line 1e.
Over $500,000 but not over $1,000,000$100,000 plus 15% of the excess over $500,000.
Over $1,000,000 but not over $1,500,000$175,000 plus 10% of the excess over $1,000,000.
Over $1,500,000 but not over $17,000,000$225,000 plus 5% of the excess over $1,500,000.
Over $17,000,000$1,000,000.
g Grassroots nontaxable amount (enter 25% of line 1f) ..........................................................................    
h Subtract line 1g from line 1a. If zero or less, enter -0-. ..........................................................................    
i Subtract line 1f from line 1c. If zero or less, enter -0-. ...........................................................................    
j If there is an amount other than zero on either line 1h or line 1i, did the organization file Form 4720 reporting
section 4911 tax for this year? ..............................................................................................................

4-Year Averaging Period Under section 501(h)
(Some organizations that made a section 501(h) election do not have to complete all of the five
columns below. See the separate instructions for lines 2a through 2f.)
Lobbying Expenditures During 4-Year Averaging Period
Calendar year (or fiscal year
beginning in)
(a) 2012 (b) 2013 (c) 2014 (d) 2015 (e) Total
2a Lobbying nontaxable amount          
b Lobbying ceiling amount
(150% of line 2a, column(e))
 
c Total lobbying expenditures          
d Grassroots nontaxable amount          
e Grassroots ceiling amount
(150% of line 2d, column (e))
 
f Grassroots lobbying expenditures          
Schedule C (Form 990 or 990-EZ) 2015


Schedule C (Form 990 or 990-EZ) 2015
Page 3
Part II-B
Complete if the organization is exempt under section 501(c)(3) and has NOT filed Form 5768 (election under section 501(h)).
For each "Yes" response on lines 1a through 1i below, provide in Part IV a detailed description of the lobbying activity.
(a)
No
Yes
(b)
Amount
1
During the year, did the filing organization attempt to influence foreign, national, state or local legislation, including any attempt to influence public opinion on a legislative matter or referendum, through the use of:
a
Volunteers? ...........................................................................................................
Yes
 
b
Paid staff or management (include compensation in expenses reported on lines 1c through 1i)? ........
Yes
 
c
Media advertisements? ...................................................................................................
 
No
 
d
Mailings to members, legislators, or the public? .............................................................................
Yes
 
54,000
e
Publications, or published or broadcast statements? ...........................................................
 
No
 
f
Grants to other organizations for lobbying purposes? ..........................................................
 
No
 
g
Direct contact with legislators, their staffs, government officials, or a legislative body? .......................
Yes
 
793,824
h
Rallies, demonstrations, seminars, conventions, speeches, lectures, or any similar means? ..................
 
No
 
i
Other activities? ...................................................................................................................
 
No
 
j
Total. Add lines 1c through 1i ....................................................................................................
847,824
2a
Did the activities in line 1 cause the organization to be not described in section 501(c)(3)? .....
 
No
b
If "Yes," enter the amount of any tax incurred under section 4912 ...........................................
 
c
If "Yes," enter the amount of any tax incurred by organization managers under section 4912 ...................
 
d
If the filing organization incurred a section 4912 tax, did it file Form 4720 for this year? ........................
 
 
Part III-A
Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6).
Yes
No
1
Were substantially all (90% or more) dues received nondeductible by members? ...............................................
1
 
 
2
Did the organization make only in-house lobbying expenditures of $2,000 or less? ............................................
2
 
 
3
Did the organization agree to carry over lobbying and political expenditures from the prior year? .................................
3
 
 
Part III-B
Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6) and if either (a) BOTH Part III-A, lines 1 and 2, are answered "No" OR (b) Part III-A, line 3, is answered “Yes."
1
Dues, assessments and similar amounts from members ......................................................................
1
 
2
Section 162(e) nondeductible lobbying and political expenditures (do not include amounts of political expenses for which the section 527(f) tax was paid).
a
Current year .............................................................................................................................
2a
 
b
Carryover from last year ............................................................................................................
2b
 
c
Total ...........................................................................................................................................
2c
 
3
Aggregate amount reported in section 6033(e)(1)(A) notices of nondeductible section 162(e) dues .
3
 
4
If notices were sent and the amount on line 2c exceeds the amount on line 3, what portion of the excess does the organization agree to carryover to the reasonable estimate of nondeductible lobbying and political expenditure next year? ......................................................................................................................
4
 
5
Taxable amount of lobbying and political expenditures (see instructions) .........................................
5
 
Part IV
Supplemental Information
Provide the descriptions required for Part l-A, line 1; Part l-B, line 4; Part l-C, line 5; Part II-A (affiliated group list); Part II-A, lines 1 and 2 (see instructions), and Part ll-B, line 1. Also, complete this part for any additional information.
Return Reference Explanation
LOBBYING ACTIVITY THE CYSTIC FIBROSIS FOUNDATION IS FOCUSED ON CURING CYSTIC FIBROSIS AND ENSURING ALL PEOPLE WITH THE DISEASE HAVE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES. IN ADDITION TO FUNDING CYSTIC FIBROSIS RESEARCH, THE FOUNDATION ADVOCATES FOR POLICIES THAT ADVANCE BASIC, TRANSLATIONAL AND CLINICAL RESEARCH AND DEVELOPMENT OF TREATMENTS FOR RARE DISEASES LIKE CYSTIC FIBROSIS AND STRATEGIES THAT GIVE ALL PEOPLE WITH THE DISEASE ACCESS TO HIGH QUALITY, SPECIALIZED CYSTIC FIBROSIS CARE. ADVOCACY ACTIVITIES INCLUDE EMAIL COMMUNICATION ENCOURAGING GRASSROOTS ADVOCATES TO CONTACT THEIR LEGISLATORS, ANNUAL EVENTS WHERE VOLUNTEERS MEET WITH MEMBERS OF CONGRESS TO DISCUSS ISSUES CRITICAL TO THE CYSTIC FIBROSIS COMMUNITY, AS WELL AS COMMUNICATING REGULARLY WITH FEDERAL LEGISLATORS AND AGENCIES.
Schedule C (Form 990 or 990EZ) 2015


Additional Data


Software ID:  
Software Version:  

SCHEDULE D
(Form 990)
Department of the Treasury
Internal Revenue Service
Supplemental Financial Statements
SchDMd Bullet Complete if the organization answered "Yes," on Form 990,
Part IV, line 6, 7, 8, 9, 10, 11a, 11b, 11c, 11d, 11e, 11f, 12a, or 12b.
SchDMd Bullet Attach to Form 990.
Information about Schedule D (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
Open to Public Inspection
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Part I
Organizations Maintaining Donor Advised Funds or Other Similar Funds or Accounts. Complete if the organization answered "Yes" on Form 990, Part IV, line 6.
(a) Donor advised funds (b) Funds and other accounts
1 Total number at end of year ....    
2 Aggregate value of contributions to (during year)    
3 Aggregate value of grants from (during year)    
4 Aggregate value at end of year ....    
5
Did the organization inform all donors and donor advisors in writing that the assets held in donor advised
funds are the organization's property, subject to the organization's exclusive legal control? ...........
6
Did the organization inform all grantees, donors, and donor advisors in writing that grant funds can be
used only for charitable purposes and not for the benefit of the donor or donor advisor, or for any other purpose conferring impermissible private benefit? ............................
Part II
Conservation Easements. Complete if the organization answered "Yes" on Form 990, Part IV, line 7.
1
Purpose(s) of conservation easements held by the organization (check all that apply).
2
Complete lines 2a through 2d if the organization held a qualified conservation contribution in the form of a conservation easement on the last day of the tax year.
Held at the End of the Year
a Total number of conservation easements ...................... 2a  
b Total acreage restricted by conservation easements .................... 2b  
c Number of conservation easements on a certified historic structure included in (a) ..... 2c  
d Number of conservation easements included in (c) acquired after 8/17/06, and not on a historic structure listed in the National Register ... 2d  
3
Number of conservation easements modified, transferred, released, extinguished, or terminated by the organization during the
tax year SchDMd Bullet  
4
Number of states where property subject to conservation easement is located SchDMd Bullet  
5
Does the organization have a written policy regarding the periodic monitoring, inspection, handling of violations, and enforcement of the conservation easements it holds? ............
6
Staff and volunteer hours devoted to monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
SchDMd Bullet  
7
Amount of expenses incurred in monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
SchDMd Bullet $  
8
Does each conservation easement reported on line 2(d) above satisfy the requirements of section 170(h)(4)(B)(i) and section 170(h)(4)(B)(ii)? .............................
9
In Part XIII, describe how the organization reports conservation easements in its revenue and expense statement, and
balance sheet, and include, if applicable, the text of the footnote to the organization’s financial statements that describes
the organization’s accounting for conservation easements.
Part III
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets.
Complete if the organization answered "Yes" on Form 990, Part IV, line 8.
1a
If the organization elected, as permitted under SFAS 116 (ASC 958), not to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide, in Part XIII, the text of the footnote to its financial statements that describes these items.
b
If the organization elected, as permitted under SFAS 116 (ASC 958), to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide the following amounts relating to these items:
(i)
Revenue included on Form 990, Part VIII, line 1 .........................SchDMd Bullet $  
(ii)
Assets included in Form 990, Part X ...............................SchDMd Bullet $  
2
If the organization received or held works of art, historical treasures, or other similar assets for financial gain, provide the
following amounts required to be reported under SFAS 116 (ASC 958) relating to these items:
a
Revenue included on Form 990, Part VIII, line 1 ..........................SchDMd Bullet $  
b
Assets included in Form 990, Part X ...............................SchDMd Bullet $  
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 52283D
Schedule D (Form 990) 2015

Schedule D (Form 990) 2015
Page 2
Part III
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets (continued)
3
Using the organization’s acquisition, accession, and other records, check any of the following that are a significant use of its collection items (check all that apply):
a
d
b
e
 
c
4
Provide a description of the organization’s collections and explain how they further the organization’s exempt purpose in
Part XIII.
5
During the year, did the organization solicit or receive donations of art, historical treasures or other similar
assets to be sold to raise funds rather than to be maintained as part of the organization’s collection?...
Part IV
Escrow and Custodial Arrangements. Complete if the organization answered "Yes" on Form 990, Part IV, line 9, or reported an amount on Form 990, Part X, line 21.
1a
Is the organization an agent, trustee, custodian or other intermediary for contributions or other assets not
included on Form 990, Part X? ....................................
b If "Yes," explain the arrangement in Part XIII and complete the following table: Amount
c Beginning balance ............................. 1c  
d Additions during the year ............................ 1d  
e Distributions during the year .......................... 1e  
f Ending balance ................................ 1f  
2a
Did the organization include an amount on Form 990, Part X, line 21, for escrow or custodial account liability?
b
If "Yes," explain the arrangement in Part XIII. Check here if the explanation has been provided in Part XIII ........
Part V
Endowment Funds. Complete if the organization answered "Yes" on Form 990, Part IV, line 10.
(a)Current year (b)Prior year (c)Two years back (d)Three years back (e)Four years back
1a Beginning of year balance ....          
b Contributions ...          
c Net investment earnings, gains, and losses          
d Grants or scholarships ...          
e Other expenditures for facilities
and programs ...
         
f Administrative expenses ....          
g End of year balance ......          
2
Provide the estimated percentage of the current year end balance (line 1g, column (a)) held as:
a
Board designated or quasi-endowment SchDMd Bullet  
b
Permanent endowment SchDMd Bullet  
c
Temporarily restricted endowment SchDMd Bullet  
The percentages on lines 2a, 2b, and 2c should equal 100%.
3a
Are there endowment funds not in the possession of the organization that are held and administered for the
organization by:

Yes
No
(i) unrelated organizations .................
3a(i)
 
 
(ii) related organizations .................
3a(ii)
 
 
b
If "Yes" on 3a(ii), are the related organizations listed as required on Schedule R? .........
3b
 
 
4
Describe in Part XIII the intended uses of the organization's endowment funds.
Part VI
Land, Buildings, and Equipment.
Complete if the organization answered 'Yes' on Form 990, Part IV, line 11a. See Form 990, Part X, line 10.
Description of property (a) Cost or other basis
(investment)
(b)Cost or other basis (other) (c) Accumulated depreciation (d) Book value
1a Land ...      
b Buildings        
c Leasehold improvements   1,553,944 739,641 814,303
d Equipment ...   6,058,050 3,719,751 2,338,299
e Other ...        
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).)..SchDMdBullet 3,152,602
Schedule D (Form 990) 2015

Schedule D (Form 990) 2015
Page 3
Part VII
Investments—Other Securities. Complete if the organization answered 'Yes' on Form 990, Part IV, line 11b. See Form 990, Part X, line 12.
(a) Description of security or category
(including name of security)
(b)Book value (c)Method of valuation:
Cost or end-of-year market value
(1)Financial derivatives    
(2)Closely-held equity interests    
(3)Other
(A) US GOVERNMENT TREASURY SEC
139,950,688 F

(B) CORPORATE DEBT SECURITIES
100,346,121 F

(C) US GOVERNMENT AGENCY ASSET
26,573,141 F

(D) COMMERCIAL AND OTHER ASSET
49,625,087 F

(E) FIXED INCOME INDEX COMMINGLED
121,683,775 F

(F) PUBLIC EQUITY COMMINGLED
815,609,324 F

(G) OTHER PUBLIC EQUITY BASED
101,139,800 F

(H) HEDGED STRATEGIES
316,136,265 F

(I) PVT EQTY & OTHR ILLIQUID FUNDS
41,260,923 F

(J) OTHR. GLOBAL EQTY. SECURITIES
445,500 F

(K) PERPETUAL TRUSTS
3,677,076 F
Total. (Column (b) must equal Form 990, Part X, col. (B) line 12.)Small Bullet 1,716,447,700
Part VIII
Investments—Program Related. Complete if the organization answered 'Yes' on Form 990, Part IV, line 11c. See Form 990, Part X, line 13.
(a) Description of investment (b) Book value (c) Method of valuation:
Cost or end-of-year market value
(1)
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 13.)Small Bullet  
Part IX
Other Assets. Complete if the organization answered 'Yes' on Form 990, Part IV, line 11d. See Form 990, Part X, line 15.
(a) Description (b) Book value
(1)
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 15.)...........Small Bullet  
Part X
Other Liabilities. Complete if the organization answered 'Yes' on Form 990, Part IV, line 11e or 11f. See Form 990, Part X, line 25.
1.(a) Description of liability (b) Book value
(1) Federal income taxes 0
INTERCOMPANY PAYABLE 58,395,410
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 25.)Small Bullet 58,395,410
2. Liability for uncertain tax positions. In Part XIII, provide the text of the footnote to the organization's financial statements that reports the organization's liability for uncertain tax positions under FIN 48 (ASC 740). Check here if the text of the footnote has been provided in Part XIII
Schedule D (Form 990) 2015

Schedule D (Form 990) 2015
Page 4
Part XI Reconciliation of Revenue per Audited Financial Statements With Revenue per Return Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1 Total revenue, gains, and other support per audited financial statements ....... 1  
2 Amounts included on line 1 but not on Form 990, Part VIII, line 12:
a Net unrealized gains (losses) on investments .... 2a  
b Donated services and use of facilities ......... 2b  
c Recoveries of prior year grants ........... 2c  
d Other (Describe in Part XIII.) ............ 2d  
e Add lines 2a through 2d ..................... 2e  
3 Subtract line 2e from line 1.................. 3  
4 Amounts included on Form 990, Part VIII, line 12, but not on line 1:
a Investment expenses not included on Form 990, Part VIII, line 7b . 4a  
b Other (Describe in Part XIII.) ........... 4b  
c Add lines 4a and 4b.................... 4c  
5 Total revenue. Add lines 3 and 4c. (This must equal Form 990, Part I, line 12.) ...... 5  
Part XII Reconciliation of Expenses per Audited Financial Statements With Expenses per Return. Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1 Total expenses and losses per audited financial statements ........... 1  
2 Amounts included on line 1 but not on Form 990, Part IX, line 25:
a Donated services and use of facilities ......... 2a  
b Prior year adjustments ............ 2b  
c Other losses ................ 2c  
d Other (Describe in Part XIII.) ............ 2d  
e Add lines 2a through 2d.................... 2e  
3 Subtract line 2e from line 1................... 3  
4 Amounts included on Form 990, Part IX, line 25, but not on line 1:
a Investment expenses not included on Form 990, Part VIII, line 7b .. 4a  
b Other (Describe in Part XIII.) ............ 4b  
c Add lines 4a and 4b..................... 4c  
5 Total expenses. Add lines 3 and 4c. (This must equal Form 990, Part I, line 18.) ...... 5  

Part XIII
Supplemental Information
Provide the descriptions required for Part II, lines 3, 5, and 9; Part III, lines 1a and 4; Part lV, lines 1b and 2b;
Part V, line 4; Part X, line 2; Part XI, lines 2d and 4b; and Part XII, lines 2d and 4b. Also complete this part to provide any additional information.
Return Reference Explanation
SCHEDULE D, PART X FIN 48 FOOTNOTE THE FOUNDATION, CFFT, AND CFPAF ARE NOT-FOR-PROFIT VOLUNTARY HEALTH ORGANIZATIONS EXEMPT FROM FEDERAL INCOME TAXES UNDER 501(C)(3) OF THE INTERNAL REVENUE CODE (THE CODE) AND FROM STATE TAXES AND HAVE BEEN CLASSIFIED AS ORGANIZATIONS THAT ARE NOT PRIVATE FOUNDATIONS UNDER SECTION 509(A) OF THE CODE. THE FOUNDATION DOES NOT HAVE ANY UNRELATED BUSINESS INCOME TAX LIABILITY AS OF DECEMBER 31, 2015 AND 2014. CONTRIBUTIONS TO THE FOUNDATION QUALIFY FOR THE CHARITABLE CONTRIBUTIONS DEDUCTION TO THE EXTENT PROVIDED BY SECTION 170 OF THE CODE. CFPAF IS ORGANIZED AS A SINGLE MEMBER LIMITED LIABILITY COMPANY THAT IS A DISREGARDED ENTITY FOR FEDERAL TAX PURPOSES. THE SOLE MEMBER OF CFPAF IS THE FOUNDATION. THE FOUNDATION IS NOT AWARE OF ANY TAX POSITION TAKEN THAT REQUIRES DISCLOSURE BASED ON CURRENT FACTS AND CIRCUMSTANCES. THE FOUNDATION ANNUALLY REVIEWS ITS TAX POSITIONS AND HAS DETERMINED THAT THERE ARE NO MATERIAL UNCERTAIN TAX POSITIONS THAT REQUIRE RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS.
Schedule D (Form 990) 2015


Additional Data


Software ID:  
Software Version:  




SCHEDULE F(Form 990)
Department of the Treasury
Internal Revenue Service
Statement of Activities Outside the United States
Right pointing arrow large image Complete if the organization answered "Yes" to Form 990,Part IV, line 14b, 15, or 16.Right pointing arrow large image Attach to Form 990. Right pointing arrow large image See separate instructions.Right pointing arrow large image Information about Schedule F (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
Open to Public Inspection
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Part I
General Information on Activities Outside the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 14b.
1
For grantmakers.Does the organization maintain records to substantiate the amount of its grants and
other assistance, the grantees’ eligibility for the grants or assistance, and the selection criteria used
to award the grants or assistance? . . . . . . . . . . . . . . . . . . . . . . . . .
2
For grantmakers. Describe in Part V the organization’s procedures for monitoring the use of its grants and other assistance outside the United States.
3
Activites per Region. (The following Part I, line 3 table can be duplicated if additional space is needed.)
(a) Region (b) Number of offices in the region (c) Number of employees, agents, and independent contractors in region (d) Activities conducted in region (by type) (e.g., fundraising, program services, investments, grants to recipients located in the region) (e) If activity listed in (d) is a program service, describe specific type of
service(s) in region
(f) Total expenditures
for and investments
in region
North America     Grantmaking NONE 141,777
Europe (Including Iceland and Greenland)     Grantmaking NONE 324,000
East Asia and the Pacific     Grantmaking NONE 162,000
Middle East and North Africa     Grantmaking NONE 108,000
Central America and the Caribbean     Investments   456,095,000
East Asia and the Pacific     Investments   932,000
Europe (Including Iceland and Greenland)     Investments   105,879,000
North America     Investments   2,181,000
           
           
           
           
           
           
           
           
           
3a Sub-total .....     565,822,777
b Total from continuation sheets to Part I ...      
c Totals (add lines 3a and 3b)     565,822,777
For Paperwork Reduction Act Notice, see the Instructions for Form 990.Cat. No. 50082W Schedule F (Form 990) 2015
Schedule F (Form 990) 2015
Page 2
Part II
Grants and Other Assistance to Organizations or Entities Outside the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 15, for any recipient who received more than $5,000. Part II can be duplicated if additional space is needed.
1 (a) Name of organization (b) IRS code section
and EIN (if applicable)
(a)(c) Region (b)(d) Purpose of
grant
(e) Amount of
cash grant
(f) Manner of
cash
disbursement
(g) Amount
of non-cash
assistance
(h) Description
of non-cash
assistance
(i) Method of
valuation
(book, FMV,
appraisal, other)
North America PILOT STUDY 97,077 CHECK      
North America PILOT STUDY 43,200 CHECK      
Europe (Including Iceland and Greenland) RESEARCH 108,000 WIRE      
Europe (Including Iceland and Greenland) RESEARCH 108,000 WIRE      
Europe (Including Iceland and Greenland) RESEARCH 108,000 WIRE      
East Asia and the Pacific PILOT STUDY 54,000 WIRE      
East Asia and the Pacific RESEARCH 108,000 WIRE      
Middle East and North Africa RESEARCH 108,000 WIRE      
             
             
             
             
             
             
             
             
2 Enter total number of recipient organizations listed above that are recognized as charities by the foreign country, recognized as tax-exempt by the IRS, or for which the grantee or counsel has provided a section 501(c)(3) equivalency letter .......MediumBullet
8
3 Enter total number of other organizations or entities .......................MediumBullet
 
Schedule F (Form 990) 2015
Schedule F (Form 990) 2015Page 3
Part III
Grants and Other Assistance to Individuals Outside the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 16.
Part III can be duplicated if additional space is needed.
(a) Type of grant or assistance (b) Region (c) Number of recipients (d) Amount of
cash grant
(e) Manner of cash
disbursement
(f) Amount of
non-cash
assistance
(g) Description
of non-cash
assistance
(h) Method of
valuation
(book, FMV,
appraisal, other)
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
               
Schedule F (Form 990) 2015
Schedule F (Form 990) 2015
Page 4
Part IV
Foreign Forms
1 Was the organization a U.S. transferor of property to a foreign corporation during the tax year? If "Yes,"the organization may be required to file Form 926, Return by a U.S. Transferor of Property to a Foreign Corporation (see Instructions for Form 926). . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
2 Did the organization have an interest in a foreign trust during the tax year? If "Yes," the organization may be required to separately file Form 3520, Annual Return to Report Transactions with Foreign Trusts and Receipt of Certain Foreign Gifts, and/or Form 3520-A, Annual Information Return of Foreign Trust With a U.S. Owner (see Instructions for Forms 3520 and 3520-A). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
3 Did the organization have an ownership interest in a foreign corporation during the tax year? If "Yes," the organization may be required to file Form 5471, Information Return of U.S. Persons with Respect to Certain Foreign Corporations. (see Instructions for Form 5471). . . . . . . . . . . . . . . . . . . . . . . . . . . .
4 Was the organization a direct or indirect shareholder of a passive foreign investment company or a qualified electing fund during the tax year? If “Yes,” the organization may be required to file Form 8621, Information Return by a Shareholder of a Passive Foreign Investment Company or Qualified Electing Fund. (see Instructions for Form 8621) .
5 Did the organization have an ownership interest in a foreign partnership during the tax year? If "Yes," the organization may be required to file Form 8865, Return of U.S. Persons with Respect to Certain Foreign Partnerships. (see Instructions for Form 8865). . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
6 Did the organization have any operations in or related to any boycotting countries during the tax year? If "Yes," the organization may be required to separately file Form 5713, International Boycott Report (see Instructions for Form 5713).. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Schedule F (Form 990) 2015
Schedule F (Form 990) 2015
Page 5
Part V
Supplemental Information
Provide the information required by Part I, line 2 (monitoring of funds); Part I, line 3, column (f) (accounting method; amounts of investments vs. expenditures per region); Part II, line 1 (accounting method); Part III (accounting method); and Part III, column (c) (estimated number of recipients), as applicable. Also complete this part to provide any additional information (see instructions).
ReturnReference Explanation
PROCEDURES FOR MONITORING GRANT FUNDS OUTSIDE OF THE U.S. THE ORGANIZATION HAS PROCEDURES IN PLACE TO MONITOR THE SCIENTIFIC PROGRESS AND FINANCIAL ASPECTS OF GRANTS AWARDED TO ENTITIES OUTSIDE OF THE UNITED STATES. THE ORGANIZATION FOLLOWS THE U.S. DEPARTMENT OF TREASURY ANTI-TERRORIST FINANCING VOLUNTARY BEST PRACTICES GUIDELINES FOR CHARITIES. IN COMPLIANCE WITH THE BEST PRACTICES, THE ORGANIZATION COLLECTS AND REVIEWS INFORMATION ABOUT THE PROSPECTIVE GRANTEES AND CONDUCTS A VETTING PROCESS TO ENSURE THEY ARE NOT SUSPECTED OF ACTIVITIES RELATED TO TERRORISM. ONCE A GRANT IS APPROVED, A WRITTEN AGREEMENT IS SIGNED BY BOTH THE ORGANIZATION AND THE GRANTEE. FUNDING IS INCREMENTAL AND SPONSORED INSTITUTIONS ARE REQUIRED TO SUBMIT ANNUAL REPORTS OF EXPENDITURES AS WELL AS SCIENTIFIC PROGRESS REPORTS. SCIENTIFIC REPORTS ARE REVIEWED BY THE ORGANIZATION'S SCIENTIFIC STAFF TO DETERMINE PROGRESS. THE FINAL GRANT PAYMENT IS CONTINGENT UPON RECEIPT AND APPROVAL OF THE REPORT OF EXPENDITURES. REPORTS OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. THE CF FOUNDATION'S INTERNAL AUDITORS CONDUCT AUDITS ON SAMPLES OF GRANT EXPENDITURE REPORTS BY EXAMINING SUPPORTING RECORDS FROM THE SPONSORED INSTITUTIONS. THE GRANT TO THE MIDDLE EAST/NORTH AFRICA REGION WAS MADE TO WEIZMANN INSTITUTE OF SCIENCE IN ISRAEL.
FOREIGN FORMS THE ACTIVITIES REFERENCED IN SCHEDULE F PART IV ARE LIMITED TO CERTAIN OF THE FOUNDATION'S INVESTMENTS.
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
   
Schedule F (Form 990) 2015
Additional Data


Software ID:  
Software Version:  



SCHEDULE G (Form 990 or 990-EZ)
Department of the Treasury
Internal Revenue Service
Supplemental Information Regarding
Fundraising or Gaming Activities
Complete if the organization answered "Yes" on Form 990, Part IV, lines 17, 18, or 19, or if the organization entered more than $15,000 on Form 990-EZ, line 6a. right arrowAttach to Form 990 or Form 990-EZ.
right arrowInformation about Schedule G (Form 990 or 990-EZ) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
Open to Public Inspection
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Part I
Fundraising Activities. Complete if the organization answered "Yes" on Form 990, Part IV, line 17.
Form 990-EZ filers are not required to complete this part.
1
Indicate whether the organization raised funds through any of the following activities. Check all that apply.
a e
b f
c g
d
2a
Did the organization have a written or oral agreement with any individual (including officers, directors, trustees
or key employees listed in Form 990, Part VII) or entity in connection with professional fundraising services?
b
If "Yes," list the ten highest paid individuals or entities (fundraisers) pursuant to agreements under which the fundraiser is
to be compensated at least $5,000 by the organization.


(i) Name and address of individual
or entity (fundraiser)
(ii) Activity (iii) Did fundraiser have custody or control of contributions? (iv) Gross receipts
from activity
(v) Amount paid to
(or retained by)
fundraiser listed in
col. (i)
(vi) Amount paid to
(or retained by)
organization
Yes No
NNE MARKETING MAIL COUNSEL   No 7,622,757 368,000 7,254,757
             
             
             
             
             
             
             
             
             
Total . . . . . . . . . . . . . . . . . . . . right arrow 7,622,757 368,000 7,254,757
3
List all states in which the organization is registered or licensed to solicit contributions or has been notified it is exempt from registration or licensing.
AL, AK, AZ, AR, CA, CO, CT, DE, FL, GA, HI, ID, IL, IN, IA, KS, KY, LA, ME, MD, MA, MI, MN, MS, MO, MT, NE, NV, NH, NJ, NM, NY, NC, ND, OH, OK, OR, PA, RI, SC, SD, TN, TX, UT, VT, VA, WA, WV, WI, WY
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 50083H
Schedule G (Form 990 or 990-EZ) 2015
Schedule G (Form 990 or 990-EZ) 2015
Page 2
Part II
Fundraising Events. Complete if the organization answered "Yes" on Form 990, Part IV, line 18, or reported more than $15,000 of fundraising event contributions and gross income on Form 990-EZ, lines 1 and 6b. List events with gross receipts greater than $5,000.




VerticalRevenue
(a) Event #1

 
(event type)
(b) Event #2

 
(event type)
(c) Other events

 
(total number)
(d) Total events
(add col. (a) through col. (c))

1

Gross receipts . . . . .

 

 

 

 

2

Less: Contributions . . . .

 

 

 

 
3 Gross income (line 1 minus
line 2) . . . . . .

 

 

 

 



VerticalDirectExpenses
4 Cash prizes . . . . .        
5 Noncash prizes . . . .        
6 Rent/facility costs . . . .        
7 Food and beverages . . .        
8 Entertainment . . . .        
9 Other direct expenses . . .        
10 Direct expense summary. Add lines 4 through 9 in column (d) . . . . . . . . . . right arrow  
11 Net income summary. Subtract line 10 from line 3, column (d). . . . . . . . . . right arrow  
Part III
Gaming. Complete if the organization answered "Yes" on Form 990, Part IV, line 19, or reported more than $15,000 on Form 990-EZ, line 6a.
VerticalRevenue
(a) Bingo (b) Pull tabs/Instant
bingo/progressive bingo
(c) Other gaming (d) Total gaming (add col.(a) through col.(c))

1

Gross revenue . . . . .

 

 

 

 
VerticalDirectExpenses

2

Cash prizes . . . . .

 

 

 

 

3

Noncash prizes . . . .

 

 

 

 

4

Rent/facility costs . . . .

 

 

 

 

5

Other direct expenses . . .

 

 

 

 


6


Volunteer labor . . . .
%
%
%


7

Direct expense summary. Add lines 2 through 5 in column (d) . . . . . . . . . . right arrow

 

8

Net gaming income summary. Subtract line 7 from line 1, column (d). . . . . . . . . right arrow

 

9
Enter the state(s) in which the organization conducts gaming activities:
a
Is the organization licensed to conduct gaming activities in each of these states? . . . . . . . .
b
If "No," explain:
 
10a
Were any of the organization's gaming licenses revoked, suspended or terminated during the tax year? . . .
b
If "Yes," explain:
 
Schedule G (Form 990 or 990-EZ) 2015
Schedule G (Form 990 or 990-EZ) 2015
Page 3
11
Does the organization conduct gaming activities with nonmembers? . . . . . . . . . . .
12
Is the organization a grantor, beneficiary or trustee of a trust or a member of a partnership or other entity
formed to administer charitable gaming? . . . . . . . . . . . . . . . . .
13
Indicate the percentage of gaming activity conducted in:
a
The organization's facility . . . . . . . . . . . . . . . . . .
13a
%
b
An outside facility . . . . . . . . . . . . . . . . . . . .
13b
%
14
Enter the name and address of the person who prepares the organization's gaming/special events books and records:
Name right arrow
Address right arrow
15a
Does the organization have a contract with a third party from whom the organization receives gaming
revenue? . . . . . . . . . . . . . . . . . . . . . . . .
b
If "Yes," enter the amount of gaming revenue received by the organization right arrow $   and the
amount of gaming revenue retained by the third party right arrow $   .
c
If "Yes," enter name and address of the third party:
Name right arrow
Address right arrow
 
 
16
Gaming manager information:
Name right arrow
Gaming manager compensation right arrow $  
Description of services provided right arrow
 
17
Mandatory distributions:
a
Is the organization required under state law to make charitable distributions from the gaming proceeds to
retain the state gaming license? . . . . . . . . . . . . . . . . . . .
b
Enter the amount of distributions required under state law distributed to other exempt organizations or spent
in the organization's own exempt activities during the tax year right arrow$  
Part IV
Supplemental Information. Provide the explanations required by Part I, line 2b, columns (iii) and (v); and Part III, lines 9, 9b, 10b, 15b, 15c, 16, and 17b, as applicable. Also complete this part to provide any additional information (see instructions).
Return Reference Explanation
PROFESSIONAL FUNDRAISING SERVICES SCHEDULE G, PART I, LINE 2B CFF HAD A WRITTEN CONTRACT WITH NNE MARKETING TO CONSULT ON ITS DIRECT MARKETING EFFORTS. THE EXPENSE FOR THE PROJECT IS $16,000 PER MONTH OR $192,000 PER YEAR, PLUS CREATIVE DEVELOPMENT, WHICH IS BILLED SEPARATELY AND ACCOUNTS FOR THE DIFFERENCE IN THE TOTAL AMOUNT PAID AND THOSE CONSULTING ACTIVITIES THAT MAY BE CONSIDERED PROFESSIONAL FUNDRAISING SERVICES. ALL DONATIONS FROM MAIL, WHICH NNE ASSISTS WITH, ARE MADE PAYABLE DIRECTLY TO THE FOUNDATION.
Schedule G (Form 990 or 990-EZ) 2015
Additional Data


Software ID:  
Software Version:  
Schedule I
(Form 990)
Department of the Treasury
Internal Revenue Service
Grants and Other Assistance to Organizations,
Governments and Individuals in the United States
Complete if the organization answered "Yes," on Form 990, Part IV, line 21 or 22.
lBullet Attach to Form 990.
lBullet Information about Schedule I (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
Open to Public
Inspection
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number
13-1930701
Part I
General Information on Grants and Assistance
1
Does the organization maintain records to substantiate the amount of the grants or assistance, the grantees' eligibility for the grants or assistance, and
the selection criteria used to award the grants or assistance? ........................
2
Describe in Part IV the organization's procedures for monitoring the use of grant funds in the United States.
Part II
Grants and Other Assistance to Domestic Organizations and Domestic Governments. Complete if the organization answered "Yes" on Form 990, Part IV, line 21, for any recipient
that received more than $5,000. Part II can be duplicated if additional space is needed.
(a) Name and address of organization
or government
(b) EIN (c) IRC section
if applicable
(d) Amount of cash grant (e) Amount of non-cash
assistance
(f) Method of valuation
(book, FMV, appraisal,
other)
(g) Description of
non-cash assistance
(h) Purpose of grant
or assistance
(1) ADVOCATE HOPE CHILDREN'S HOSPITAL
4440 WEST 95TH STREET
OAK LAWN,IL60453
36-2169147 501C(3) 29,160       CF CARE CENTER
(2) ADVOCATE HOPE CHILDREN'S HOSPITAL
4440 WEST 95TH STREET
OAK LAWN,IL60453
36-2169147 501C(3) 36,445       RESEARCH
(3) ADVOCATE MEDICAL GROUP
701 LEE ST
DES PLAINES,IL60016
36-2169147 501C(3) 23,220       CF CARE CENTER
(4) ALBANY MEDICAL COLLEGE
ELSMERE A-107
ALBANY,NY12208
14-1338310 501C(3) 241,529       CF CARE CENTER
(5) ALFRED I DUPONT INSTITUTE OF THE NEMOURS FOUNDATI
1600 ROCKLAND ROAD PO BOX 269
WILMINGTON,DE19899
59-0634433 501C(3) 57,540       CF CARE CENTER
(6) ALL CHILDREN'S HOSPITAL
DEPT 9010 PO BOX 31020
ST PETERSBURG,FL33731
59-0683252 501C(3) 171,598       CF CARE CENTER
(7) ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI
2300 CHILDRENS PLAZA - BOX 205
CHICAGO,IL60614
36-2170833 501C(3) 196,771       CF CARE CENTER
(8) ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI
2300 CHILDRENS PLAZA - BOX 205
CHICAGO,IL60614
36-2170833 501C(3) 43,200       PILOT STUDY
(9) ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI
2300 CHILDRENS PLAZA - BOX 205
CHICAGO,IL60614
36-2170833 501C(3) 118,800       QUALITY IMPROVEMENT
(10) ANN AND ROBERT H LURIE CHILDREN'S HOSPITAL OF CHI
2300 CHILDRENS PLAZA - BOX 205
CHICAGO,IL60614
36-2170833 501C(3) 122,433       RESEARCH
(11) ARIZONA BOARD OF REGENTS UNIVERSITY OF ARIZONA
888 N EUCLID ROOM 510
TUCSON,AZ857223308
74-2652689 IRC 115 91,411       CF CARE CENTER
(12) ARIZONA BOARD OF REGENTS UNIVERSITY OF ARIZONA
888 N EUCLID ROOM 510
TUCSON,AZ857223308
74-2652689 IRC 115 17,280       QUALITY IMPROVEMENT
(13) ARKANSAS CHILDREN'S HOSPITAL RESEARCH INSTITUTE I
800 MARSHALL STREET SLOT 512-17
LITTLE ROCK,AR72202
71-0694931 501C(3) 95,226       CF CARE CENTER
(14) ASTHMA AND ALLERGY SPECIALISTS PA
411 BILLINGS ROAD SUITE 104
CHARLOTTE,NC28211
56-1913043 C CORP 58,541       CF CARE CENTER
(15) ATLANTIC HEALTH SYSTEM
100 MADISON AVENUE
MORRISTOWN,NJ07962
52-1958352 501C(3) 58,994       CF CARE CENTER
(16) ATLANTIC HEALTH SYSTEM
100 MADISON AVENUE
MORRISTOWN,NJ07962
52-1958352 501C(3) 50,122       PILOT STUDY
(17) ATLANTIC HEALTH SYSTEM
100 MADISON AVENUE
MORRISTOWN,NJ07962
52-1958352 501C(3) 39,383       RESEARCH STUDY
(18) BAYLOR COLLEGE OF MEDICINE
PO BOX 1
HOUSTON,TX77212
74-1613878 501C(3) 32,379       ADULT CARE
(19) BAYLOR COLLEGE OF MEDICINE
PO BOX 1
HOUSTON,TX77212
74-1613878 501C(3) 393,780       CF CARE CENTER
(20) BAYSTATE MEDICAL CENTER (95-196)
759 CHESTNUT STREET
SPRINGFIELD,MA01199
04-2790311 501C(3) 48,221       CF CARE CENTER
(21) BETH ISRAEL MEDICAL CENTER
160 WATER STREET 24TH FLOOR
NEW YORK,NY10038
13-5564934 501C(3) 135,875       CF CARE CENTER
(22) BETH ISRAEL MEDICAL CENTER
160 WATER STREET 24TH FLOOR
NEW YORK,NY10038
13-5564934 501C(3) 21,460       QUALITY IMPROVEMENT
(23) BILLINGS CLINIC
2800 10TH AVENUE NORTH
BILLINGS,MT59107
81-0231784 501C(3) 78,664       CF CARE CENTER
(24) BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SY
750 UNIVERSITY AVENUE
MADISON,WI53706
39-6006492 IRC 115 191,092       CF CARE CENTER
(25) BOARD OF REGENTS OF THE UNIVERSITY OF WISCONSIN SY
750 UNIVERSITY AVENUE
MADISON,WI53706
39-6006492 IRC 115 17,280       QUALITY IMPROVEMENT
(26) BOARD OF TRUSTEES OF SOUTHERN ILLINOIS UNIVERSITY
PO BOX 19636
SPRINGFIELD,IL62794
37-6005961 501C(3) 21,190       CF CARE CENTER
(27) BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UN
651 SERRA STREET SUITE 220
STANFORD,CA943056215
94-1156365 501C(3) 322,016       CF CARE CENTER
(28) BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UN
651 SERRA STREET SUITE 220
STANFORD,CA943056215
94-1156365 501C(3) 68,750       TRAINING
(29) BOWLING GREEN STATE UNIVERSITY
106 UNIVERSITY HALL
BOWLING GREEN,OH43403
34-6402018 IRC 115 54,000       CF CARE CENTER
(30) BRIGHAM AND WOMEN'S HOSPITAL BOSTON
10 VINING STREET
BOSTON,MA02115
04-2312909 501C(3) 32,385       QUALITY IMPROVEMENT
(31) BRIGHAM AND WOMEN'S HOSPITAL BOSTON
10 VINING STREET
BOSTON,MA02115
04-2312909 501C(3) 97,200       RESEARCH
(32) CALIFORNIA PACIFIC MEDICAL CENTER RESEARCH INSTITU
2200 WEBSTER STREET ROOM 405
SAN FRANCISCO,CA94115
94-0562680 501C(3) 33,386       CF CARE CENTER
(33) CAMC HEALTH EDUCATION AND RESEARCH INSTITUTE
PO BOX 765
CHARLESTON,WV25323
55-0753754 501C(3) 53,546       CF CARE CENTER
(34) CARLE FOUNDATION HOSPITAL
611 W PARK STREET
URBANA,IL61801
37-1119538 501C(3) 33,945       CF CARE CENTER
(35) CASE WESTERN RESERVE UNIVERSITY
10900 EUCLID AVENUE
CLEVELAND,OH441067037
34-1018992 501C(3) 194,916       PILOT STUDY
(36) CASE WESTERN RESERVE UNIVERSITY
10900 EUCLID AVENUE
CLEVELAND,OH441067037
34-1018992 501C(3) 518,400       RESEARCH
(37) CASE WESTERN RESERVE UNIVERSITY
10900 EUCLID AVENUE
CLEVELAND,OH441067037
34-1018992 501C(3) 923,133       RESEARCH CENTER
(38) CASE WESTERN RESERVE UNIVERSITY
10900 EUCLID AVENUE
CLEVELAND,OH441067037
34-1018992 501C(3) 46,250       RESEARCH STUDY
(39) CASE WESTERN RESERVE UNIVERSITY
10900 EUCLID AVENUE
CLEVELAND,OH441067037
34-1018992 501C(3) 100,000       TRAINING
(40) CENTER FOR MEDICAL TECHNOLOGY POLICY
401 EAST PRATT STREET SUITE 631
BALTIMORE,MD21202
27-1203017 501C(3) 150,418       QUALITY IMPROVEMENT
(41) CENTRAL FLORIDA PULMONARY GROUP
326 NORTH MILLS AVENUE
ORLANDO,FL32803
59-1760017 C CORP 73,916       CF CARE CENTER
(42) CHEST MEDICINE ASSOCIATES
100 FODEN ROAD
SOUTH PORTLAND,ME04106
01-0461391 C CORP 27,000       QUALITY IMPROVEMENT
(43) CHILDREN'S & WOMEN'S PHYSICIANS OF WESTCHESTER
40 SUNSHINE COTTAGE ROAD SKLYLINE
VALHALLA,NY10595
13-3956599 LLP 89,654       CF CARE CENTER
(44) CHILDREN'S HEALTH CARE
2525 CHICAGO AVENUE SOUTH
MINNEAPOLIS,MN55404
41-1754276 501C(3) 114,819       CF CARE CENTER
(45) CHILDREN'S HEALTHCARE OF ATLANTA
1001 JOHNSON FERRY ROAD NORTH
ATLANTA,GA30342
58-2367819 501C(3) 105,579       CF CARE CENTER
(46) CHILDREN'S HOSPITAL & RESEARCH CENTER AT OAKLAND
747 52ND STREET
OAKLAND,CA94609
94-0382330 501C(3) 40,432       CF CARE CENTER
(47) CHILDREN'S HOSPITAL & RESEARCH CENTER AT OAKLAND
747 52ND STREET
OAKLAND,CA94609
94-0382330 501C(3) 125,000       RESEARCH
(48) CHILDREN'S HOSPITAL CENTRAL CALIFORNIA
9300 VALLEY CHILDRENS PLACE
MADERA,CA93638
94-1294954 501C(3) 87,067       CF CARE CENTER
(49) CHILDREN'S HOSPITAL CORPORATION (BOSTON CHILDREN'S
300 LONGWOOD AVE
BOSTON,MA021155737
04-2774441 501C(3) 32,200       ADULT CARE
(50) CHILDREN'S HOSPITAL CORPORATION (BOSTON CHILDREN'S
300 LONGWOOD AVE
BOSTON,MA021155737
04-2774441 501C(3) 414,097       CF CARE CENTER
(51) CHILDREN'S HOSPITAL CORPORATION (BOSTON CHILDREN'S
300 LONGWOOD AVE
BOSTON,MA021155737
04-2774441 501C(3) 33,264       QUALITY IMPROVEMENT
(52) CHILDREN'S HOSPITAL CORPORATION (BOSTON CHILDREN'S
300 LONGWOOD AVE
BOSTON,MA021155737
04-2774441 501C(3) 235,000       TRAINING
(53) CHILDREN'S HOSPITAL MEDICAL CENTER
RESEARCH ACCOUNTING
CINCINNATI,OH45229
31-0833936 501C(3) 197,897       CF CARE CENTER
(54) CHILDREN'S HOSPITAL MEDICAL CENTER
RESEARCH ACCOUNTING
CINCINNATI,OH45229
31-0833936 501C(3) 470,000       RESEARCH CENTER
(55) CHILDREN'S HOSPITAL MEDICAL CENTER
RESEARCH ACCOUNTING
CINCINNATI,OH45229
31-0833936 501C(3) 127,500       TRAINING
(56) CHILDREN'S HOSPITAL MEDICAL CENTER AKRON
ONE PERKINS SQUARE
AKRON,OH443081062
34-0714357 501C(3) 237,827       CF CARE CENTER
(57) CHILDREN'S HOSPITAL OF MICHIGAN
3663 WOODWARD AVE S STE 200
DETROIT,MI48201
38-1357994 501C(3) 79,423       CF CARE CENTER
(58) CHILDREN'S HOSPITAL OF ORANGE COUNTY
PO BOX 5700
ORANGE,CA926135700
95-2321786 501C(3) 127,743       CF CARE CENTER
(59) CHILDREN'S HOSPITAL OF ORANGE COUNTY
PO BOX 5700
ORANGE,CA926135700
95-2321786 501C(3) 17,280       QUALITY IMPROVEMENT
(60) CHILDREN'S HOSPITAL OF PITTSBURGH
3705 FIFTH AVENUE
PITTSBURGH,PA15213
25-0402510 501C(3) 370,914       CF CARE CENTER
(61) CHILDREN'S HOSPITAL LOS ANGELES
4650 SUNSET BLVD
LOS ANGELES,CA90027
95-1690977 501C(3) 135,628       CF CARE CENTER
(62) CHILDREN'S LUNG SPECIALISTS
3838 MEADOWS LANE
LAS VEGAS,NV89107
88-0271963 C-CORP 105,565       CF CARE CENTER
(63) CHILDREN'S MEDICAL CENTER
ONE CHILDRENS PLAZA
DAYTON,OH454041815
31-0672132 501C(3) 99,563       CF CARE CENTER
(64) CHILDREN'S MERCY HOSPITAL
2401 GILLHAM ROAD
KANSAS CITY,MO64108
44-0605373 501C(3) 149,817       CF CARE CENTER
(65) CHILDREN'S MERCY HOSPITAL
2401 GILLHAM ROAD
KANSAS CITY,MO64108
44-0605373 501C(3) 17,280       QUALITY IMPROVEMENT
(66) CHILDREN'S NATIONAL MEDICAL CENTER
111 MICHIGAN AVENUE NW
WASHINGTON,DC20010
52-1640403 501C(3) 117,654       CF CARE CENTER
(67) CHILDREN'S RESEARCH INSTITUTE (AT CNMC)
111 MICHIGAN AVENUE NW
WASHINGTON,DC20010
52-1654453 501C(3) 108,000       RESEARCH
(68) CHILDREN'S SPECIALTY GROUP PLLC
811 REDGATE AVE
NORFOLK,VA23507
54-1871633 LLC 95,676       CF CARE CENTER
(69) CHRISTUS SANTA ROSA HEALTHCARE
333 NORTH SANTA ROSA
SAN ANTONIO,TX78207
74-1109665 501C(3) 24,410       CF CARE CENTER
(70) CONNECTICUT CHILDREN'S MEDICAL CENTER
282 WASHINGTON STREET
HARTFORD,CT06106
06-0646755 501C(3) 56,059       CF CARE CENTER
(71) COOK CHILDREN'S MEDICAL CENTER CF CENTER
801 SEVENTH AVENUE
FT WORTH,TX76104
75-2051646 501C(3) 184,912       CF CARE CENTER
(72) DAUGHTERS OF CHARITY HEALTH SERVICES OF AUSTIN
PO BOX 1
HOUSTON,TX77212
74-1109643 501C(3) 218,074       CF CARE CENTER
(73) PHILADELPHIA HEALTH & EDUCATION CORPORATION
3201 ARCH STREET SUITE 420
PHILADELPHIA,PA19104
23-2979433 501C(3) 185,068       CF CARE CENTER
(74) DUKE UNIVERSITY
BOX 104025
DURHAM,NC27710
56-0532129 501C(3) 116,829       CF CARE CENTER
(75) EAST TENNESSEE CHILDREN'S HOSPITAL ASSOCIATION IN
2100 CLINCH AVENUE 310
KNOXVILLE,TN37916
62-6002604 501C(3) 158,780       CF CARE CENTER
(76) EASTERN MAINE MEDICAL CENTER
417 STATE STREET SUITE 305
BANGOR,ME04401
01-0211501 501C(3) 39,461       CF CARE CENTER
(77) EASTERN VIRGINIA MEDICAL SCHOOL
601 CHILDRENS LANE
NORFOLK,VA23507
54-6055378 501C(3) 54,000       QUALITY IMPROVEMENT
(78) EMORY UNIVERSITY
1380 SOUTH OXFORD ROAD
ATLANTA,GA30322
58-0566256 501C(3) 59,400       ADULT CARE
(79) EMORY UNIVERSITY
1380 SOUTH OXFORD ROAD
ATLANTA,GA30322
58-0566256 501C(3) 317,678       CF CARE CENTER
(80) EMORY UNIVERSITY
1380 SOUTH OXFORD ROAD
ATLANTA,GA30322
58-0566256 501C(3) 97,200       RESEARCH
(81) EMORY UNIVERSITY
1380 SOUTH OXFORD ROAD
ATLANTA,GA30322
58-0566256 501C(3) 562,333       RESEARCH CENTER
(82) EMORY UNIVERSITY
1380 SOUTH OXFORD ROAD
ATLANTA,GA30322
58-0566256 501C(3) 46,250       RESEARCH STUDY
(83) EMORY UNIVERSITY
1380 SOUTH OXFORD ROAD
ATLANTA,GA30322
58-0566256 501C(3) 62,750       TRAINING
(84) ERLANGER HEALTH SYSTEM
975 EAST THIRD STREET
CHATTANOOGA,TN37403
62-6000101 501C(3) 46,560       CF CARE CENTER
(85) FACULTY PHYSICIANS & SURGEONS OF LLUSM
PO BOX 2000
LOMA LINDA,CA92350
33-0672915 501C(3) 59,711       CF CARE CENTER
(86) FAIRFAX NEONATAL ASSOCIATES PC DBAPEDIATRIC LUNG
2730-B PROSPERITY AVENUE
FAIRFAX,VA22031
54-1110106 C CORP 32,671       CF CARE CENTER
(87) FLETCHER ALLEN HEALTH CARE
111 COLCHESTER AVE
BURLINGTON,VT05401
03-0219309 501C(3) 32,157       ADULT CARE
(88) FLETCHER ALLEN HEALTH CARE
111 COLCHESTER AVE
BURLINGTON,VT05401
03-0219309 501C(3) 162,935       CF CARE CENTER
(89) GEISINGER MEDICAL CENTER
N ACADEMY DRIVE
DANVILLE,PA17822
23-6291113 501C(3) 73,805       CF CARE CENTER
(90) GEORGIA HEALTH SCIENCES UNIVERSITY
1120 15TH STREET
AUGUSTA,GA309128300
58-6002053 501C(3) 180,013       CF CARE CENTER
(91) GLYCOMIMETICS INC
401 PROFESSIONAL DRIVE SUITE 250
GAITHERSBURG,MD20879
06-1686563 C CORP 70,750       RESEARCH
(92) GOOD SAMARITAN HOSPITAL
1000 MONTAUK HIGHWAY
NEW YORK,NY11795
11-1888924 501C(3) 15,540       CF CARE CENTER
(93) GREENVILLE HOSPITAL SYSTEM
701 GROVE ROAD
GREENVILLE,SC29605
57-6007863 501C(3) 44,149       CF CARE CENTER
(94) GUNDERSEN LUTHERAN MEDICAL FOUNDATION
1900 SOUTH AVENUE
LA CROSSE,WI54601
39-1249705 501C(3) 21,840       CF CARE CENTER
(95) HARTFORD HOSPITAL (CENTRAL CONNECTICUT CYSTIC FIBR
80 SEYMOUR STREET
HARTFORD,CT06102
06-0646668 501C(3) 121,777       CF CARE CENTER
(96) HARTFORD HOSPITAL (CENTRAL CONNECTICUT CYSTIC FIBR
80 SEYMOUR STREET
HARTFORD,CT06102
06-0646668 501C(3) 17,280       QUALITY IMPROVEMENT
(97) HENRY M JACKSON FOUNDATION FOR THE ADVANCEMENT OF
1404 ROCKVILLE PIKE SUITE 600
ROCKVILLE,MD20852
52-1317896 501C(3) 38,505       CF CARE CENTER
(98) HENRY M JACKSON FOUNDATION FOR THE ADVANCEMENT OF
1404 ROCKVILLE PIKE SUITE 600
ROCKVILLE,MD20852
52-1317896 501C(3) 86,400       PILOT STUDY
(99) IOWA HEALTH FOUNDATION (BLANK CHILDREN'S CF CENTER
1440 INGERSOLL AVENUE
DES MOINES,IA50309
42-1467682 501C(3) 63,993       CF CARE CENTER
(100) KAISER FOUNDATION RESEARCH INSTITUTE
1800 HARRISON STREET 16TH FLOOR
OAKLAND,CA94612
94-1105628 501C(3) 229,679       CF CARE CENTER
(101) KAISER FOUNDATION RESEARCH INSTITUTE
1800 HARRISON STREET 16TH FLOOR
OAKLAND,CA94612
94-1105628 501C(3) 17,280       QUALITY IMPROVEMENT
(102) KALEIDA HEALTH
219 BRYANT STREET
BUFFALO,NY14209
16-1533232 501C(3) 78,280       CF CARE CENTER
(103) LANDON PEDIATRIC FOUNDATION
3291 LOMA VISTA ROAD
VENTURA,CA93003
93-1097216 501C(3) 32,742       CF CARE CENTER
(104) LEE MEMORIAL HEALTH SYSTEM FOUNDATION INC
16451 HEALTHPARK COMMONS 200
FT MYERS,FL339083630
65-0645343 501C(3) 26,589       CF CARE CENTER
(105) LEHIGH VALLEY HOSPITAL
2545 SCHOENERSVILLE ROAD
BETHLEHEM,PA18017
23-1689692 501C(3) 23,665       CF CARE CENTER
(106) LIFE SCIENCES RESEARCH FOUNDATION
3520 SAN MARTIN DRIVE
BALTIMORE,MD212182440
52-1231801 501C(3) 61,000       RESEARCH
(107) LONG BEACH MEMORIAL MEDICAL CENTER
2801 ATLANTIC AVENUE
LONG BEACH,CA90806
95-3527031 501C(3) 27,000       ADULT CARE
(108) LONG ISLAND JEWISH MEDICAL CENTER
972 BRUSHHOLLOW ROAD
WESTBURY,NY11590
11-2241326 501C(3) 165,240       CF CARE CENTER
(109) LONG ISLAND JEWISH MEDICAL CENTER
972 BRUSHHOLLOW ROAD
WESTBURY,NY11590
11-2241326 501C(3) 241,952       QUALITY IMPROVEMENT
(110) LOYOLA UNIVERSITY OF CHICAGO
2160 S FIRST AVENUE
MAYWOOD,IL60153
36-1408475 501C(3) 57,082       CF CARE CENTER
(111) LSUMC - SHREVEPORT
P O BOX 33932
SHREVEPORT,LA71130
72-0702002 501C(3) 89,853       CF CARE CENTER
(112) LUTHERAN HOSPITAL OF INDIANA
7950 WEST JEFFERSON BOULEVARD
FT WAYNE,IN46804
35-1963748 C CORP 47,047       RESEARCH
(113) MAINE MEDICAL CENTER
22 BRAMHALL STREET
PORTLAND,ME04102
01-0238552 501C(3) 189,931       CF CARE CENTER
(114) MARSHFIELD CLINIC RESEARCH FOUNDATION
1000 NORTH OAK AVENUE
MARSHFIELD,WI54449
39-0452970 501C(3) 29,666       CF CARE CENTER
(115) MARY BRIDGE CHILDREN'S FOUNDATION
311 SOUTH L STREET
TACOMA,WA98405
94-3030039 501C(3) 48,527       CF CARE CENTER
(116) UCLA DEPARTMENT OF PEDIATRIC GROUP PRACTICE
10833 LE CONTE AVE MDCC 22-412
LOS ANGELES,CA90095
95-4372298 501C(3) 5,069       CF CARE CENTER
(117) MAYO CLINIC ROCHESTER
200 FIRST STREET SW PLUMMER 5
ROCHESTER,MN55905
41-6011702 501C(3) 55,271       CF CARE CENTER
(118) MEDICAL UNIVERSITY OF SOUTH CAROLINA
PO BOX 997
CHARLESTON,SC29402
57-6000722 115 119,607       CF CARE CENTER
(119) MEMORIAL MEDICAL CENTER FOUNDATION
2801 ATLANTIC AVENUE
LONG BEACH,CA908011428
95-6105984 501C(3) 151,209       CF CARE CENTER
(120) MIAMI CHILDREN'S HOSPITAL
3200 SW 60TH COURT
MIAMI,FL33155
59-0638499 501C(3) 58,617       CF CARE CENTER
(121) MICHIGAN STATE UNIVERSITY
301 ADMINISTRATION BLDG
EAST LANSING,MI488241046
38-6005984 501C(3) 52,040       CF CARE CENTER
(122) MICHIGAN STATE UNIVERSITY
301 ADMINISTRATION BLDG
EAST LANSING,MI488241046
38-6005984 501C(3) 21,882       CF CARE CENTER
(123) WESTERN MICHIGAN UNIVERSITY SCHOOL OF MEDICINE
1000 OAKLAND DRIVE
KALAMAZOO,MI49001
45-4135256 501C(3) 24,860       CF CARE CENTER
(124) MISSION HEALTHCARE FOUNDATION INC
980 HENDERSONVILLE ROAD
ASHEVILLE,NC28803
56-1881331 501C(3) 10,388       CF CARE CENTER
(125) MONMOUTH MEDICAL CENTER FOUNDATION
300 SECOND AVENUE
LONG BRANCH,NJ07740
22-2456079 501C(3) 128,004       CF CARE CENTER
(126) NATIONAL JEWISH MEDICAL AND RESEARCH CENTER
1400 JACKSON STREET
DENVER,CO80206
74-2044647 501C(3) 210,500       CF CARE CENTER
(127) NATIONAL JEWISH MEDICAL AND RESEARCH CENTER
1400 JACKSON STREET
DENVER,CO80206
74-2044647 501C(3) 17,280       QUALITY IMPROVEMENT
(128) NATIONAL JEWISH MEDICAL AND RESEARCH CENTER
1400 JACKSON STREET
DENVER,CO80206
74-2044647 501C(3) 291,600       RESEARCH
(129) NATIONAL JEWISH MEDICAL AND RESEARCH CENTER
1400 JACKSON STREET
DENVER,CO80206
74-2044647 501C(3) 525,000       RESEARCH CENTER
(130) NEMOURS CHILDREN'S CLINIC JACKSONVILLE
807 NIRA STREET
JACKSONVILLE,FL32207
59-0634433 501C(3) 32,400       ADULT CARE
(131) NEMOURS CHILDREN'S CLINIC JACKSONVILLE
807 NIRA STREET
JACKSONVILLE,FL32207
59-0634433 501C(3) 74,356       CF CARE CENTER
(132) NEMOURS CHILDREN'S CLINIC ORLANDO
496 S DELANEY AVENUE SUITE 408
ORLANDO,FL32801
59-0634433 501C(3) 47,070       CF CARE CENTER
(133) NEMOURS CHILDREN'S CLINIC ORLANDO
496 S DELANEY AVENUE SUITE 408
ORLANDO,FL32801
59-0634433 501C(3) 13,230       QUALITY IMPROVEMENT
(134) NEMOURS CHILDREN'S CLINIC PENSACOLA
5153 NORTH 9TH AVENUE
PENSACOLA,FL32504
59-0634433 501C(3) 53,761       CF CARE CENTER
(135) NEW YORK UNIVERSITY SCHOOL OF MEDICINE
550 FIRST AVENUE
NEW YORK,NY10016
13-5562308 501C(3) 27,000       ADULT CARE
(136) NEW YORK UNIVERSITY SCHOOL OF MEDICINE
550 FIRST AVENUE
NEW YORK,NY10016
13-5562308 501C(3) 116,580       CF CARE CENTER
(137) NEW YORK UNIVERSITY SCHOOL OF MEDICINE
550 FIRST AVENUE
NEW YORK,NY10016
13-5562308 501C(3) 21,600       QUALITY IMPROVEMENT
(138) NORTH SUBURBAN PULMONARY
8780 W GOLF ROAD SUITE 102
NILES,IL60714
36-4393017 C CORP 21,750       CF CARE CENTER
(139) NORTHWESTERN UNIVERSITY
750 N LAKE SHORE DRIVE
CHICAGO,IL606113008
36-2167817 501C(3) 79,547       CF CARE CENTER
(140) NORTHWESTERN UNIVERSITY
750 N LAKE SHORE DRIVE
CHICAGO,IL606113008
36-2167817 501C(3) 54,000       PILOT STUDY
(141) OREGON HEALTH & SCIENCE UNIVERSITY
0690 SW BANCROFT STREET
PORTLAND,OR97239
23-7083114 501C(3) 32,400       ADULT CARE
(142) OREGON HEALTH & SCIENCE UNIVERSITY
0690 SW BANCROFT STREET
PORTLAND,OR97239
23-7083114 501C(3) 314,635       CF CARE CENTER
(143) OREGON HEALTH & SCIENCE UNIVERSITY
0690 SW BANCROFT STREET
PORTLAND,OR97239
23-7083114 501C(3) 32,400       QUALITY IMPROVEMENT
(144) ORLANDO HEALTH FOUNDATION
3160 SOUTHGATE COMMERCE BLVD
ORLANDO,FL32806
59-2244943 501C(3) 60,522       CF CARE CENTER
(145) ORLANDO HEALTH FOUNDATION
3160 SOUTHGATE COMMERCE BLVD
ORLANDO,FL32806
59-2244943 501C(3) 17,280       QUALITY IMPROVEMENT
(146) OSF SAINT FRANCIS MEDICAL CENTER
530 NE GLEN OAK AVENUE
PEORIA,IL61637
37-0662569 501C(3) 62,455       QUALITY IMPROVEMENT
(147) PENNSYLVANIA STATE UNIVERSITY
OFFICE OF RESEARCH AFFAIRS H138
HERSHEY,PA17033
24-6000376 IRC 115 76,116       CF CARE CENTER
(148) PENNSYLVANIA STATE UNIVERSITY
OFFICE OF RESEARCH AFFAIRS H138
HERSHEY,PA17033
24-6000376 IRC 115 79,713       QUALITY IMPROVEMENT
(149) PHOENIX CHILDREN'S HOSPITAL
1300 NORTH 12TH STREET
PHOENIX,AZ85006
86-0422559 501C(3) 258,524       CF CARE CENTER
(150) PROVIDENCE ALASKA MEDICAL CENTER
3200 PROVIDENCE DRIVE
ANCHORAGE,AK995196604
92-0016429 501C(3) 36,053       QUALITY IMPROVEMENT
(151) PROVIDENCE PHYSICIAN SERVICE
101 W 8TH AVE
SPOKANE,WA99204
91-1216033 C CORP 87,207       TRAINING
(152) REGENTS OF THE UNIVERSITY OF COLORADO AT DENVER
F428 FITZSIMONS BUILDING 500
AURORA,CO800450508
84-6000555 501C(3) 248,497       CF CARE CENTER
(153) REGENTS OF THE UNIVERSITY OF COLORADO AT DENVER
F428 FITZSIMONS BUILDING 500
AURORA,CO800450508
84-6000555 501C(3) 32,376       QUALITY IMPROVEMENT
(154) RENOWN HEALTH FOUNDATION
1155 MILL ST Z-5
RENO,NV89502
94-2872749 501C(3) 23,430       CF CARE CENTER
(155) RHODE ISLAND HOSPITAL
593 EDDY STREET
PROVIDENCE,RI02903
05-0258954 501C(3) 50,758       ADULT CARE
(156) RHODE ISLAND HOSPITAL
593 EDDY STREET
PROVIDENCE,RI02903
05-0258954 501C(3) 71,248       CF CARE CENTER
(157) RUSH UNIVERSITY MEDICAL CENTER ST LUKE'S MEDICA
1725 WEST HARRISON SUITE 718
CHICAGO,IL60612
36-2174823 501C(3) 27,000       ADULT CARE
(158) RUSH UNIVERSITY MEDICAL CENTER ST LUKE'S MEDICA
1725 WEST HARRISON SUITE 718
CHICAGO,IL60612
36-2174823 501C(3) 87,915       CF CARE CENTER
(159) RUSH UNIVERSITY MEDICAL CENTER ST LUKE'S MEDICA
1725 WEST HARRISON SUITE 718
CHICAGO,IL60612
36-2174823 501C(3) 33,264       QUALITY IMPROVEMENT
(160) RUTGERS THE STATE UNIVERSITY OF NEW JERSEY
58 BEVIER ROAD
PISCATAWAY,NJ088548010
46-2354111 IRC 115 71,717       CF CARE CENTER
(161) RUTGERS THE STATE UNIVERSITY OF NEW JERSEY
58 BEVIER ROAD
PISCATAWAY,NJ088548010
46-2354111 IRC 115 54,000       PILOT STUDY
(162) SAINT BARNABAS MEDICAL CENTER
200 SOUTH ORANGE AVENUE
LIVINGSTON,NJ07039
22-1494440 501C(3) 26,578       CF CARE CENTER
(163) SAINT JOSEPH'S HOSPITAL AND MEDICAL CENTER
703 MAIN STREET
PATERSON,NJ07503
22-1487602 501C(3) 75,733       CF CARE CENTER
(164) SAMARITAN MEDICAL CENTER
513 WASHINGTON STREET
WATERTOWN,NY13601
15-0533577 501C(3) 8,797       CF CARE CENTER
(165) SANFORD CHILDREN'S SPECIALTY CLINIC
1305 W 18TH STREET
SIOUX FALLS,SD571175039
46-0447693 501C(3) 83,337       CF CARE CENTER
(166) SANTA BARBARA COTTAGE HOSPITAL
2405 DE LA VINA STREET
SANTA BARBARA,CA93105
95-1644629 501C(3) 13,853       CF CARE CENTER
(167) SCOTT & WHITE MEMORIAL HOSPITAL
2401 SOUTH 31ST STREET
TEMPLE,TX76508
74-1166904 501C(3) 29,875       CF CARE CENTER
(168) SEATTLE CHILDREN'S HOSPITAL
4800 SAND POINT WAY NE MS T-0111
SEATTLE,WA98105
91-0564748 501C(3) 30,200       QUALITY IMPROVEMENT
(169) SEATTLE CHILDREN'S HOSPITAL
4800 SAND POINT WAY NE MS T-0111
SEATTLE,WA98105
91-0564748 501C(3) 181,203       CF CARE CENTER
(170) SOUTH BROWARD HOSPITAL DISTRICT
CYSTIC FIBROSIS CLINIC
HOLLYWOOD,FL33321
59-6014973 501C(3) 144,432       CF CARE CENTER
(171) SPECTRUM HEALTH FOUNDATION
100 MICHIGAN STREET NE MC 004
GRAND RAPIDS,MI49503
38-2752328 501C(3) 229,641       CF CARE CENTER
(172) ST ALEXIUS MEDICAL CENTER
PO BOX 5510
BISMARCK,ND585065510
45-0226711 501C(3) 29,433       CF CARE CENTER
(173) ST JOSEPH'S REGIONAL MEDICAL CENTER INC
611 EAST CEDAR STREET SUITE 405
MISHAWAKA,IN465451468
35-1568821 501C(3) 31,007       CF CARE CENTER
(174) ST LOUIS UNIVERSITY
3500 LINDELL BLVD
ST LOUIS,MO63103
43-0654872 501C(3) 111,319       CF CARE CENTER
(175) ST LUKE'S REGIONAL MEDICAL CENTER
100 EAST IDAHO SUITE 200
BOISE,ID83712
82-0161600 501C(3) 177,516       CF CARE CENTER
(176) THE RESEARCH FOUNDATION FOR THE STATE UNIVERSITY O
PO BOX 9
ALBANY,NY122010009
14-1368361 501C(3) 17,280       QUALITY IMPROVEMENT
(177) THE RESEARCH FOUNDATION FOR THE STATE UNIVERSITY O
PO BOX 9
ALBANY,NY122010009
14-1368361 501C(3) 187,191       CF CARE CENTER
(178) SUTTER MEDICAL CENTER SACRAMENTO
5609 J STREET SUITE C
SACRAMENTO,CA95819
94-1156621 501C(3) 54,864       CF CARE CENTER
(179) SYNEDGEN INC
1420 CLAREMONT BLVD SUITE 105D
CLAREMONT,CA91711
80-0384893 C CORP 236,299       RESEARCH
(180) TENET ST MARY'S INC CYSTIC FIBROSIS CENTER
PO BOX 24620 901 45TH STREET
WEST PALM BEACH,FL33407
75-2932830 C CORP 50,705       CF CARE CENTER
(181) TENET ST MARY'S INC CYSTIC FIBROSIS CENTER
PO BOX 24620 901 45TH STREET
WEST PALM BEACH,FL33407
75-2932830 C CORP 17,280       QUALITY IMPROVEMENT
(182) TENET ST MARY'S INC CYSTIC FIBROSIS CENTER
PO BOX 24620 901 45TH STREET
WEST PALM BEACH,FL33407
75-2932830 C CORP 54,000       RESEARCH
(183) TENNESSEE DEPARTMENT OF HEALTHLAB SERVICES
710 JAMES ROBERTSON PARKWAY 6TH FL
NASHVILLE,TN37243
62-6001445 OTHER GOV'T 20,000       CF CARE CENTER
(184) TEXAS TECH UNIVERSITY HEALTH SCIENCES CENTER
3601 4TH STREET
LUBBOCK,TX79430
75-2668014 IRC 115 27,178       CF CARE CENTER
(185) THE ADULT CYSTIC FIBROSIS CENTER OF JACKSONVILLE
425 N LEE STREET SUITE 202
JACKSONVILLE,FL32204
20-4055796 501C(3) 26,305       CF CARE CENTER
(186) THE CHILDREN'S HOSPITAL OF PHILADELPHIA
3516 CIVIC CENTER BLVD
PHILADELPHIA,PA191044318
23-1352166 501C(3) 32,400       ADULT CARE
(187) THE CHILDREN'S HOSPITAL OF PHILADELPHIA
3516 CIVIC CENTER BLVD
PHILADELPHIA,PA191044318
23-1352166 501C(3) 244,895       CF CARE CENTER
(188) THE CHILDREN'S HOSPITAL OF PHILADELPHIA
3516 CIVIC CENTER BLVD
PHILADELPHIA,PA191044318
23-1352166 501C(3) 100,000       RESEARCH
(189) THE CURATORS OF THE UNIVERSITY OF MISSOURI
310 JESSE HALL
COLUMBIA,MO65211
43-6003859 IRC 115 26,998       ADULT CARE
(190) THE CURATORS OF THE UNIVERSITY OF MISSOURI
310 JESSE HALL
COLUMBIA,MO65211
43-6003859 IRC 115 172,980       CF CARE CENTER
(191) THE CURATORS OF THE UNIVERSITY OF MISSOURI
310 JESSE HALL
COLUMBIA,MO65211
43-6003859 IRC 115 54,000       PILOT STUDY
(192) THE CURATORS OF THE UNIVERSITY OF MISSOURI
310 JESSE HALL
COLUMBIA,MO65211
43-6003859 IRC 115 33,264       QUALITY IMPROVEMENT
(193) THE CURATORS OF THE UNIVERSITY OF MISSOURI
310 JESSE HALL
COLUMBIA,MO65211
43-6003859 IRC 115 216,000       RESEARCH
(194) THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE
PO BOX 414876
BOSTON,MA02114
04-2697983 501C(3) 192,638       CF CARE CENTER
(195) THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE
PO BOX 414876
BOSTON,MA02114
04-2697983 501C(3) 95,932       RESEARCH STUDY
(196) THE GENERAL HOSPITAL CORPORATION (MASSACHUSETTS GE
PO BOX 414876
BOSTON,MA02114
04-2697983 501C(3) 227,500       TRAINING
(197) THE HITCHCOCK FOUNDATION
ONE MEDICAL CENTER DRIVE
LEBANON,NH03756
02-0222139 501C(3) 194,670       CF CARE CENTER
(198) THE JOHNS HOPKINS UNIVERSITY
600 N WOLFE STREET PARK 316
BALTIMORE,MD21205
52-0595110 501C(3) 344,986       CF CARE CENTER
(199) THE JOHNS HOPKINS UNIVERSITY
600 N WOLFE STREET PARK 316
BALTIMORE,MD21205
52-0595110 501C(3) 43,200       PILOT STUDY
(200) THE JOHNS HOPKINS UNIVERSITY
600 N WOLFE STREET PARK 316
BALTIMORE,MD21205
52-0595110 501C(3) 108,000       RESEARCH
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8701 WATERTOWN PLANK ROAD
MILWAUKEE,WI53226
39-0806261 501C(3) 301,404       CF CARE CENTER
(202) THE MEDICAL COLLEGE OF WISCONSIN
8701 WATERTOWN PLANK ROAD
MILWAUKEE,WI53226
39-0806261 501C(3) 81,000       QUALITY IMPROVEMENT
(203) THE OHIO STATE UNIVERSITY
1960 KENNY ROAD
COLUMBUS,OH43210
31-6025986 IRC 115 54,000       ADULT CARE
(204) THE OHIO STATE UNIVERSITY
1960 KENNY ROAD
COLUMBUS,OH43210
31-6025986 IRC 115 97,200       CF CARE CENTER
(205) THE OHIO STATE UNIVERSITY
1960 KENNY ROAD
COLUMBUS,OH43210
31-6025986 IRC 115 46,250       RESEARCH STUDY
(206) THE PRESIDENT & FELLOWS OF HARVARD COLLEGE
25 SHATTUCK STREET
BOSTON,MA02115
04-2103580 501C(3) 47,930       RESEARCH STUDY
(207) THE RECTOR AND VISITORS OF THE UNIVERSITY OF VIRGI
PO BOX 400195
CHARLOTTESVILLE,VA229044195
54-6001796 501C(3) 247,972       CF CARE CENTER
(208) THE RECTOR AND VISITORS OF THE UNIVERSITY OF VIRGI
PO BOX 400195
CHARLOTTESVILLE,VA229044195
54-6001796 501C(3) 26,460       QUALITY IMPROVEMENT
(209) THE REGENTS OF THE UNIVERSITY OF CALIFORNIA DAVIS
ONE SHIELDS AVENUE
DAVIS,CA95616
94-6036494 501C(3) 90,381       CF CARE CENTER
(210) THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN D
9500 GILMAN DRIVE DEPT 0934
LA JOLLA,CA920930954
95-6006144 501C(3) 172,247       CF CARE CENTER
(211) THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F
3333 CALIFORNIA STREET SUITE 315
SAN FRANCISCO,CA941430962
94-6036493 501C(3) 64,800       ADULT CARE
(212) THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F
3333 CALIFORNIA STREET SUITE 315
SAN FRANCISCO,CA941430962
94-6036493 501C(3) 158,730       CF CARE CENTER
(213) THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F
3333 CALIFORNIA STREET SUITE 315
SAN FRANCISCO,CA941430962
94-6036493 501C(3) 54,000       PILOT STUDY
(214) THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F
3333 CALIFORNIA STREET SUITE 315
SAN FRANCISCO,CA941430962
94-6036493 501C(3) 430,000       RESEARCH CENTER
(215) THE REGENTS OF THE UNIVERSITY OF CALIFORNIA SAN F
3333 CALIFORNIA STREET SUITE 315
SAN FRANCISCO,CA941430962
94-6036493 501C(3) 196,750       TRAINING
(216) THE REGENTS OF THE UNIVERSITY OF MICHIGAN
3003 SOUTH STATE STREET ROOM 3089
ANN ARBOR,MI481091274
38-6006309 501C(3) 32,400       ADULT CARE
(217) THE REGENTS OF THE UNIVERSITY OF MICHIGAN
3003 SOUTH STATE STREET ROOM 3089
ANN ARBOR,MI481091274
38-6006309 501C(3) 391,989       CF CARE CENTER
(218) THE REGENTS OF THE UNIVERSITY OF MICHIGAN
3003 SOUTH STATE STREET ROOM 3089
ANN ARBOR,MI481091274
38-6006309 501C(3) 54,000       PILOT STUDY
(219) THE REGENTS OF THE UNIVERSITY OF MICHIGAN
3003 SOUTH STATE STREET ROOM 3089
ANN ARBOR,MI481091274
38-6006309 501C(3) 32,400       QUALITY IMPROVEMENT
(220) THE REGENTS OF THE UNIVERSITY OF MICHIGAN
3003 SOUTH STATE STREET ROOM 3089
ANN ARBOR,MI481091274
38-6006309 501C(3) 233,000       RESEARCH
(221) THE REGENTS OF THE UNIVERSITY OF MICHIGAN
3003 SOUTH STATE STREET ROOM 3089
ANN ARBOR,MI481091274
38-6006309 501C(3) 61,250       TRAINING
(222) THE REGENTS OF THE UNIVERSITY OF MINNESOTA
200 OAK ST SE
MINNEAPOLIS,MN554552070
41-6007513 IRC 115 32,400       ADULT CARE
(223) THE REGENTS OF THE UNIVERSITY OF MINNESOTA
200 OAK ST SE
MINNEAPOLIS,MN554552070
41-6007513 IRC 115 339,509       CF CARE CENTER
(224) THE REGENTS OF THE UNIVERSITY OF MINNESOTA
200 OAK ST SE
MINNEAPOLIS,MN554552070
41-6007513 IRC 115 161,250       TRAINING
(225) THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HO
HUNTINGTON NATIONAL BANK
COLUMBUS,OH43260
31-6056230 501C(3) 43,200       PILOT STUDY
(226) THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HO
700 CHILDRENS DRIVE
COLUMBUS,OH43260
31-6056230 501C(3) 33,264       QUALITY IMPROVEMENT
(227) THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HO
700 CHILDRENS DRIVE
COLUMBUS,OH43260
31-6056230 501C(3) 284,495       CF CARE CENTER
(228) THE TAMPA GENERAL HOSPITAL FOUNDATION
PO BOX 1289
TAMPA,FL33601
23-7354477 501C(3) 110,492       CF CARE CENTER
(229) THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF
351 ENGINEERING TERRACE
NEW YORK,NY10027
13-5598093 501C(3) 32,400       ADULT CARE
(230) THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF
351 ENGINEERING TERRACE
NEW YORK,NY10027
13-5598093 501C(3) 185,030       CF CARE CENTER
(231) THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF
351 ENGINEERING TERRACE
NEW YORK,NY10027
13-5598093 501C(3) 33,264       QUALITY IMPROVEMENT
(232) THE TRUSTEES OF COLUMBIA UNIVERSITY IN THE CITY OF
351 ENGINEERING TERRACE
NEW YORK,NY10027
13-5598093 501C(3) 66,250       TRAINING
(233) THE UNIVERSITY OF ALABAMA AT BIRMINGHAM
1530 3RD AVE S THT422
BIRMINGHAM,AL352940006
63-6005396 501C(3) 327,460       CF CARE CENTER
(234) THE UNIVERSITY OF ALABAMA AT BIRMINGHAM
1530 3RD AVE S THT422
BIRMINGHAM,AL352940006
63-6005396 501C(3) 42,966       QUALITY IMPROVEMENT
(235) THE UNIVERSITY OF ALABAMA AT BIRMINGHAM
1530 3RD AVE S THT422
BIRMINGHAM,AL352940006
63-6005396 501C(3) 108,000       RESEARCH
(236) THE UNIVERSITY OF ALABAMA AT BIRMINGHAM
1530 3RD AVE S THT422
BIRMINGHAM,AL352940006
63-6005396 501C(3) 525,000       RESEARCH CENTER
(237) THE UNIVERSITY OF ALABAMA AT BIRMINGHAM
1530 3RD AVE S THT422
BIRMINGHAM,AL352940006
63-6005396 501C(3) 47,930       RESEARCH STUDY
(238) THE UNIVERSITY OF CHICAGO
5801 S ELLIS AVENUE
CHICAGO,IL60637
36-2177139 501C(3) 82,149       CF CARE CENTER
(239) THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL
OFFICE OF SPONSORED RESEARCH
CHAPEL HILL,NC275991350
56-6001393 501C(3) 421,387       CF CARE CENTER
(240) THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL
OFFICE OF SPONSORED RESEARCH
CHAPEL HILL,NC275991350
56-6001393 501C(3) 97,200       PILOT STUDY
(241) THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL
OFFICE OF SPONSORED RESEARCH
CHAPEL HILL,NC275991350
56-6001393 501C(3) 42,727       QUALITY IMPROVEMENT
(242) THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL
OFFICE OF SPONSORED RESEARCH
CHAPEL HILL,NC275991350
56-6001393 501C(3) 305,200       RESEARCH
(243) THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL
OFFICE OF SPONSORED RESEARCH
CHAPEL HILL,NC275991350
56-6001393 501C(3) 600,000       RESEARCH CENTER
(244) THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL
OFFICE OF SPONSORED RESEARCH
CHAPEL HILL,NC275991350
56-6001393 501C(3) 94,180       RESEARCH STUDY
(245) THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL
OFFICE OF SPONSORED RESEARCH
CHAPEL HILL,NC275991350
56-6001393 501C(3) 127,500       TRAINING
(246) THE UNIVERSITY OF NORTH CAROLINA AT CHARLOTTE
9201 UNIVERSITY CITY BLVD
CHARLOTTE,NC282230001
56-0791228 501C(3) 47,930       RESEARCH STUDY
(247) THE UNIVERSITY OF TEXAS AT AUSTIN
P O BOX 7726
AUSTIN,TX787137726
74-6000203 IRC 115 43,567       RESEARCH STUDY
(248) TOLEDO CHILDREN'S HOSPITAL
2142 N COVE BLVD
TOLEDO,OH43606
34-4428256 501C(3) 106,198       CF CARE CENTER
(249) TRUSTEES OF DARTMOUTH COLLEGE
11 ROPE FERRY ROAD 6210
HANOVER,NH037551404
02-0222111 501C(3) 868,198       QUALITY IMPROVEMENT
(250) TRUSTEES OF DARTMOUTH COLLEGE
11 ROPE FERRY ROAD 6210
HANOVER,NH037551404
02-0222111 501C(3) 520,000       RESEARCH CENTER
(251) TRUSTEES OF INDIANA UNIVERSITY
PO BOX 66057
BLOOMINGTON,IN462666057
35-6001673 501C(3) 32,400       ADULT CARE
(252) TRUSTEES OF INDIANA UNIVERSITY
PO BOX 66057
BLOOMINGTON,IN462666057
35-6001673 501C(3) 341,021       CF CARE CENTER
(253) TRUSTEES OF INDIANA UNIVERSITY
PO BOX 66057
BLOOMINGTON,IN462666057
35-6001673 501C(3) 21,600       QUALITY IMPROVEMENT
(254) TRUSTEES OF INDIANA UNIVERSITY
PO BOX 66057
BLOOMINGTON,IN462666057
35-6001673 501C(3) 227,500       TRAINING
(255) TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA
133 SOUTH 36TH STREET MEZZANINE
PHILADELPHIA,PA191043246
23-1352685 501C(3) 27,000       ADULT CARE
(256) TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA
133 SOUTH 36TH STREET MEZZANINE
PHILADELPHIA,PA191043246
23-1352685 501C(3) 54,000       PILOT STUDY
(257) TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA (ON BEH
3451 WALNUT STREET
PHILADELPHIA,PA19104
23-1352685 501C(3) 166,458       CF CARE CENTER
(258) TULANE UNIVERSITY MEDICAL SCHOOL
6401 FRERET ST
NEW ORLEANS,LA70118
72-0423889 501C(3) 32,400       ADULT CARE
(259) TULANE UNIVERSITY MEDICAL SCHOOL
6401 FRERET ST
NEW ORLEANS,LA70118
72-0423889 501C(3) 251,489       CF CARE CENTER
(260) UNIVERSITY AT BUFFALO PEDIATRIC ASSOCIATES
219 BRYANT STREET
BUFFALO,NY14222
16-1238821 501C(3) 80,223       PILOT STUDY
(261) UNIVERSITY HOSPITALS OF CLEVELAND RAINBOW BABIES
2074 ABINGDON ROAD
CLEVELAND,OH44106
34-0714775 501C(3) 26,336       ADULT CARE
(262) UNIVERSITY HOSPITALS OF CLEVELAND RAINBOW BABIES
2074 ABINGDON ROAD
CLEVELAND,OH44106
34-0714775 501C(3) 217,059       CF CARE CENTER
(263) UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES
4301 WEST MARKHAM STREET
LITTLE ROCK,AR72205
71-6046242 IRC 115 62,063       CF CARE CENTER
(264) UNIVERSITY OF CENTRAL FLORIDA
12201 RESEARCH PARKWAY SUITE 501
ORLANDO,FL32826
59-3086453 501C(3) 108,000       CF CARE CENTER
(265) UNIVERSITY OF CINCINNATI PHYSICIANS COMPANY
231 ALBERT SABIN WAY
CINCINNATI,OH452670564
31-1435820 501C(3) 162,305       CF CARE CENTER
(266) UNIVERSITY OF CINCINNATI PHYSICIANS COMPANY
231 ALBERT SABIN WAY
CINCINNATI,OH452670564
31-1435820 501C(3) 92,161       QUALITY IMPROVEMENT
(267) UNIVERSITY OF COLORADO HEALTH SCIENCES CENTER
4200 E 9TH AVENUE
DENVER,CO80262
84-6000555 501C(3) 127,500       TRAINING
(268) UNIVERSITY OF FLORIDA
1600 SW ARCHER RD SUITE D2-15
GAINESVILLE,FL32610
59-6002052 IRC 115 104,670       CF CARE CENTER
(269) UNIVERSITY OF FLORIDA
1600 SW ARCHER RD SUITE D2-15
GAINESVILLE,FL32610
59-6002052 IRC 115 55,109       RESEARCH STUDY
(270) UNIVERSITY OF IOWA
B 5 JESSUP HALL
IOWA CITY,IA52242
42-6004813 IRC 115 181,163       CF CARE CENTER
(271) UNIVERSITY OF IOWA
B 5 JESSUP HALL
IOWA CITY,IA52242
42-6004813 IRC 115 97,200       PILOT STUDY
(272) UNIVERSITY OF IOWA
B 5 JESSUP HALL
IOWA CITY,IA52242
42-6004813 IRC 115 600,000       RESEARCH CENTER
(273) UNIVERSITY OF IOWA
B 5 JESSUP HALL
IOWA CITY,IA52242
42-6004813 IRC 115 61,250       TRAINING
(274) UNIVERSITY OF KANSAS MEDICAL CENTER RESEARCH INSTI
3901 RAINBOW BOULEVARD MSN 1039
KANSAS CITY,KS661032937
48-1108830 501C(3) 27,000       ADULT CARE
(275) UNIVERSITY OF KANSAS MEDICAL CENTER RESEARCH INSTI
3901 RAINBOW BOULEVARD MSN 1039
KANSAS CITY,KS661032937
48-1108830 501C(3) 186,117       CF CARE CENTER
(276) UNIVERSITY OF KENTUCKY RESEARCH FOUNDATION
740 SOUTH LIMESTONE
LEXINGTON,KY405360284
61-6033693 501C(3) 163,858       CF CARE CENTER
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JOUETT HALL BELKNAP CAMPUS
LOUISVILLE,KY40292
61-1029626 501C(3) 145,765       CF CARE CENTER
(278) UNIVERSITY OF MARYLAND
650 W BALTIMORE ST - 8 SOUTH
BALTIMORE,MD21201
52-6002033 IRC 115 43,200       ADULT CARE
(279) UNIVERSITY OF MASSACHUSETTS MEDICAL CENTER
55 LAKE AVENUE
WORCESTER,MA10655
04-3167352 IRC 115 25,240       CF CARE CENTER
(280) UNIVERSITY OF MASSACHUSETTS MEDICAL CENTER
55 LAKE AVENUE
WORCESTER,MA10655
04-3167352 IRC 115 84,954       PILOT STUDY
(281) UNIVERSITY OF MIAMI
1601 NW 12TH AVENUE
MIAMI,FL33136
59-0624458 501C(3) 145,129       CF CARE CENTER
(282) UNIVERSITY OF MIAMI
1601 NW 12TH AVENUE
MIAMI,FL33136
59-0624458 501C(3) 445,025       QUALITY IMPROVEMENT
(283) UNIVERSITY OF MIAMI
1601 NW 12TH AVENUE
MIAMI,FL33136
59-0624458 501C(3) 97,200       RESEARCH
(284) UNIVERSITY OF MISSISSIPPI MEDICAL CENTER
2500 NORTH STATE STREET
JACKSON,MS392164505
64-6008520 501C(3) 171,258       CF CARE CENTER
(285) UNIVERSITY OF NEBRASKA MEDICAL CENTER
985100 NEBRASKA MEDICAL CENTER
OMAHA,NE681987835
47-0049123 501C(3) 27,000       ADULT CARE
(286) UNIVERSITY OF NEBRASKA MEDICAL CENTER
985100 NEBRASKA MEDICAL CENTER
OMAHA,NE681987835
47-0049123 501C(3) 193,275       CF CARE CENTER
(287) UNIVERSITY OF NEW MEXICO HEALTH SCIENCES CENTER
HEALTH SCIENCES AND SERVICES BLDG
ALBUQUERQUE,NM871315041
85-6000642 IRC 115 94,328       CF CARE CENTER
(288) UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER
PO BOX 26901
OKLAHOMA CITY,OK73190
73-6017987 IRC 115 99,213       CF CARE CENTER
(289) UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER
PO BOX 26901
OKLAHOMA CITY,OK73190
73-6017987 IRC 115 112,692       PILOT STUDY
(290) UNIVERSITY OF PITTSBURGH
350 THACKERAY HALL
PITTSBURGH,PA15260
25-0965591 501C(3) 27,000       ADULT CARE
(291) UNIVERSITY OF PITTSBURGH
350 THACKERAY HALL
PITTSBURGH,PA15260
25-0965591 501C(3) 139,508       QUALITY IMPROVEMENT
(292) UNIVERSITY OF PITTSBURGH
350 THACKERAY HALL
PITTSBURGH,PA15260
25-0965591 501C(3) 194,400       RESEARCH
(293) UNIVERSITY OF PITTSBURGH
350 THACKERAY HALL
PITTSBURGH,PA15260
25-0965591 501C(3) 500,000       RESEARCH CENTER
(294) UNIVERSITY OF PITTSBURGH
350 THACKERAY HALL
PITTSBURGH,PA15260
25-0965591 501C(3) 46,250       RESEARCH STUDY
(295) UNIVERSITY OF PITTSBURGH
350 THACKERAY HALL
PITTSBURGH,PA15260
25-0965591 501C(3) 124,370       TRAINING
(296) UNIVERSITY OF ROCHESTER
1325 MT HOPE AVENUE SUITE 260
ROCHESTER,NY14642
16-0743209 501C(3) 165,281       CF CARE CENTER
(297) UNIVERSITY OF SOUTH CAROLINA RESEARCH FOUNDATION
901 SUMTER STREET SUITE 501
COLUMBIA,SC29208
57-0967350 501C(3) 48,928       CF CARE CENTER
(298) UNIVERSITY OF SOUTH FLORIDA
17 DAVIS BOULEVARD SUITE 200
TAMPA,FL33606
59-3102112 IRC 115 28,676       CF CARE CENTER
(299) UNIVERSITY OF SOUTHERN CALIFORNIA
1540 ALCAZAR STREET
LOS ANGELES,CA900339002
95-1642394 501C(3) 95,280       RESEARCH
(300) UNIVERSITY OF SOUTHERN CALIFORNIA KECK SCHOOL OF M
1540 ALCAZAR STREET CHP-100
LOS ANGELES,CA90033
95-1642394 501C(3) 167,216       CF CARE CENTER
(301) UNIVERSITY OF TENNESSEE
62 S DUNLAP
MEMPHIS,TN38163
62-6001636 IRC 115 97,449       CF CARE CENTER
(302) UNIVERSITY OF TENNESSEE MEDICAL CENTER
1940 ALCOA HWY SUITE E-110
KNOXVILLE,TN37920
31-1626179 501C(3) 40,500       CF CARE CENTER
(303) UNIVERSITY OF TENNESSEE MEDICAL CENTER
1940 ALCOA HWY SUITE E-110
KNOXVILLE,TN37920
31-1626179 501C(3) 40,204       PILOT STUDY
(304) UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT SAN A
7703 FLOYD CURL DRIVE
SAN ANTONIO,TX782293900
74-1586031 IRC 115 27,000       ADULT CARE
(305) UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT SAN A
7703 FLOYD CURL DRIVE
SAN ANTONIO,TX782293900
74-1586031 IRC 115 64,362       CF CARE CENTER
(306) UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT SAN A
7703 FLOYD CURL DRIVE
SAN ANTONIO,TX782293900
74-1586031 IRC 115 17,280       QUALITY IMPROVEMENT
(307) UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT TYLER
11937 US HWY 271
TYLER,TX75708
75-6001354 IRC 115 92,775       CF CARE CENTER
(308) UNIVERSITY OF TEXAS MD ANDERSON CANCER CENTER
1515 HOLCOMBE BLVD
HOUSTON,TX77030
74-6001118 IRC 115 35,000       RESEARCH
(309) UNIVERSITY OF UTAH
406 PARK BLDG
SALT LAKE CITY,UT84112
87-6000525 501C(3) 127,313       PATIENT REGISTRY
(310) UNIVERSITY OF UTAH
406 PARK BLDG
SALT LAKE CITY,UT84112
87-6000525 501C(3) 284,909       CF CARE CENTER
(311) UNIVERSITY OF WASHINGTON
4333 BROOKLYN AVENUE NE BOX 359472
SEATTLE,WA981959472
91-6001537 IRC 115 396,137       CF CARE CENTER
(312) UNIVERSITY OF WASHINGTON
4333 BROOKLYN AVENUE NE BOX 359472
SEATTLE,WA981959472
91-6001537 IRC 115 647,930       RESEARCH
(313) UNIVERSITY OF WASHINGTON
4333 BROOKLYN AVENUE NE BOX 359472
SEATTLE,WA981959472
91-6001537 IRC 115 195,161       RESEARCH STUDY
(314) UT SOUTHWESTERN MEDICAL CENTER AT DALLAS
5323 HARRY HINES BLVD
DALLAS,TX753909040
75-6002868 IRC 115 178,397       ADULT CARE
(315) UT SOUTHWESTERN MEDICAL CENTER AT DALLAS
5323 HARRY HINES BLVD
DALLAS,TX753909040
75-6002868 IRC 115 337,785       CF CARE CENTER
(316) UT SOUTHWESTERN MEDICAL CENTER AT DALLAS
5323 HARRY HINES BLVD
DALLAS,TX753909040
75-6002868 IRC 115 53,835       QUALITY IMPROVEMENT
(317) UT SOUTHWESTERN MEDICAL CENTER AT DALLAS
5323 HARRY HINES BLVD
DALLAS,TX753909040
75-6002868 IRC 115 46,250       RESEARCH STUDY
(318) UTAH DEPARTMENT OF HEALTH
44 MARIO CAPECCHI DRIVE
SALT LAKE CITY,UT84114
87-6000545 OTHER'GOV'T 15,377       CF CARE CENTER
(319) VANDERBILT UNIVERSITY
PO BOX 30195
NASHVILLE,TN372410195
62-0476822 501C(3) 246,237       CF CARE CENTER
(320) VANDERBILT UNIVERSITY
PO BOX 30195
NASHVILLE,TN372410195
62-0476822 501C(3) 100,000       TRAINING
(321) VIA CHRISTI REGIONAL MEDICAL CENTER CF CLINIC
3311 EAST MURDOCK STREET
WICHITA,KS67218
48-1172106 501C(3) 68,572       CF CARE CENTER
(322) VIRGINIA COMMONWEALTH UNIVERSITY
BOX 2506 - VCU STATION
RICHMOND,VA232842506
54-6001758 IRC 115 54,000       ADULT CARE
(323) VIRGINIA COMMONWEALTH UNIVERSITY
BOX 2506 - VCU STATION
RICHMOND,VA232842506
54-6001758 IRC 115 138,725       CF CARE CENTER
(324) WAKE FOREST UNIVERSITY HEALTH SCIENCES
MEDICAL CENTER BLVD
WINSTONSALEM,NC271571064
22-3849199 501C(3) 87,375       CF CARE CENTER
(325) WAKE FOREST UNIVERSITY HEALTH SCIENCES
MEDICAL CENTER BLVD
WINSTONSALEM,NC271571064
22-3849199 501C(3) 43,200       PILOT STUDY
(326) WAKE FOREST UNIVERSITY HEALTH SCIENCES
MEDICAL CENTER BLVD
WINSTONSALEM,NC271571064
22-3849199 501C(3) 92,016       RESEARCH
(327) WASHINGTON UNIVERSITY
700 ROSEDALE AVENUE
ST LOUIS,MO631121408
43-0653611 501C(3) 310,130       CF CARE CENTER
(328) WAYNE STATE UNIVERSITY
GRANTS CONTRACTS OFFICE III
DETROIT,MI48201
38-6028425 501C(3) 51,820       CF CARE CENTER
(329) WEST VIRGINIA UNIVERSITY RESEARCH CORPORATION
PO BOX 6001
MORGANTOWN,WV265066001
55-0665758 501C(3) 129,385       CF CARE CENTER
(330) YALE UNIVERSITY
47 COLLEGE STREET SUITE 203
NEW HAVEN,CT065208047
06-0646973 501C(3) 59,309       ADULT CARE
(331) YALE UNIVERSITY
47 COLLEGE STREET SUITE 203
NEW HAVEN,CT065208047
06-0646973 501C(3) 173,041       CF CARE CENTER
(332) YALE UNIVERSITY
47 COLLEGE STREET SUITE 203
NEW HAVEN,CT065208047
06-0646973 501C(3) 43,200       PILOT STUDY
(333) YALE UNIVERSITY
47 COLLEGE STREET SUITE 203
NEW HAVEN,CT065208047
06-0646973 501C(3) 222,200       RESEARCH
(334) HEALTHWELL FOUNDATION
PO BOX 4133
GAITHERSBURG,MD20885
20-0413676 501C(3) 2,574,502       PATIENT ASSISTANCE
(335) CYSTIC FIBROSIS FOUNDATION THERAPEUTICS INC
6931 ARLINGTON ROAD SUITE 200
BETHESDA,MD20814
91-2059167 501C(3) 86,230,120       GENERAL SUPPORT
2
Enter total number of section 501(c)(3) and government organizations listed in the line 1 table ................. Bullet Image
177
3
Enter total number of other organizations listed in the line 1 table ........................ . Bullet Image
13
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50055P
Schedule I (Form 990) 2015

Schedule I (Form 990) 2015
Page 2
Part III
Grants and Other Assistance to Domestic Individuals. Complete if the organization answered "Yes" on Form 990, Part IV, line 22.
Part III can be duplicated if additional space is needed.
(a) Type of grant or assistance (b) Number of
recipients
(c) Amount of
cash grant
(d) Amount of
non-cash assistance
(e) Method of valuation (book,
FMV, appraisal, other)
(f) Description of non-cash assistance
(1) PATIENT ASSISTANCE PROGRAM 1016 1,817,226      
(2) FELLOWSHIPS 4 22,339      
(2)
(3)
(4)
(5)
(6)
(7)
Part IV
Supplemental Information. Provide the information required in Part I, line 2, Part III, column (b), and any other additional information.
Return Reference Explanation
PROCEDURES FOR MONITORING GRANT FUNDS INSIDE OF THE U.S. PART I, LINE 2 THE ORGANIZATION HAS PROCEDURES IN PLACE TO MONITOR THE SCIENTIFIC PROGRESS AND FINANCIAL ASPECTS OF GRANT FUNDS AWARDED TO ENTITIES INSIDE OF THE U.S. SPONSORED INSTITUTIONS ARE REQUIRED TO SUBMIT ANNUAL REPORTS OF EXPENDITURES AS WELL AS SCIENTIFIC PROGRESS REPORTS. SCIENTIFIC REPORTS ARE REVIEWED BY THE ORGANIZATION'S SCIENTIFIC STAFF TO ENSURE PROGRESS HAS BEEN ATTAINED. THE FINAL GRANT PAYMENT IS CONTINGENT UPON RECEIPT AND APPROVAL OF THE REPORT OF EXPENDITURES. REPORTS OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE. THE CF FOUNDATION'S INTERNAL AUDITORS CONDUCT AUDITS ON SAMPLES OF GRANT EXPENDITURE REPORTS BY EXAMINING SUPPORTING RECORDS FROM THE SPONSORED INSTITUTION. FOR GRANTS TO FOR-PROFIT ORGANIZATIONS THE CF FOUNDATION HAS PROCEDURES IN PLACE TO 1) SEE THAT THE GRANT FUNDS AWARDED ARE SPENT ONLY FOR THE PURPOSE FOR WHICH THE GRANT IS MADE AND 2) OBTAIN FULL AND COMPLETE REPORTS FROM THE GRANTEE ORGANIZATION ON HOW THE FUNDS ARE SPENT CONSISTENT WITH IRS GUIDELINES FOR EXPENDITURE RESPONSIBILITY. THE ORGANIZATION PERFORMS PRE-GRANT INQUIRIES DEALING WITH MATTERS SUCH AS THE IDENTITY, HISTORY, ACTIVITIES, AND PRACTICES OF THE GRANTEE TO GAIN REASONABLE ASSURANCE THAT THEY WILL USE THE GRANT FUNDS FOR THE PURPOSE FOR WHICH RECEIVED. ONCE A GRANT IS APPROVED, A WRITTEN AGREEMENT IS SIGNED BY BOTH THE ORGANIZATION AND THE GRANTEE THAT INCLUDES THE FOLLOWING AGREEMENTS: ANY AMOUNTS NOT USED FOR PURPOSES OF THE GRANT WILL BE REPAID, THE GRANTEE WILL KEEP RECORDS OF RECEIPTS AND EXPENDITURES AND MAKE THEM AVAILABLE TO THE GRANTOR AT REASONABLE TIMES, AND FUNDS CANNOT BE USED TO INFLUENCE LEGISLATION OR UNDERTAKE ANY NONEXEMPT ACTIVITY. SCHEDULE I, PART III CFF PERFORMS EXTENSIVE MONITORING OF PATIENT ASSISTANCE GRANTS IN ACCORDANCE WITH DHHS OIG REGULATIONS. FELLOWSHIPS ARE AWARDED TO INVESTIGATORS CONDUCTING RESEARCH RELATED TO GRANTS REPORTED IN PART II. SEE SUPPLEMENTAL INFORMATION FOR PART I, LINE 2 FOR PROCEDURES USED TO MONITOR THESE GRANTS. PRIOR TO MAKING FELLOWSHIP PAYMENTS, SUPPORTING DOCUMENTATION OF EXPENDITURES ARE REVIEWED AND APPROVED BY STAFF TO ENSURE INCURRED COSTS ARE APPROPRIATE.
Schedule I (Form 990) 2015



Additional Data


Software ID:  
Software Version:  


Schedule J
(Form 990)
Department of the Treasury
Internal Revenue Service
Compensation Information
For certain Officers, Directors, Trustees, Key Employees, and Highest
Compensated Employees
SchJMediumBullet Complete if the organization answered "Yes" on Form 990, Part IV, line 23.
SchJMediumBullet Attach to Form 990.
SchJMediumBullet Information about Schedule J (Form 990) and its instructions is at www.irs.gov/form990.
OMB No. 1545-0047
2015
Open to Public Inspection
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Part I
Questions Regarding Compensation
Yes
No
1a
Check the appropiate box(es) if the organization provided any of the following to or for a person listed on Form
990, Part VII, Section A, line 1a. Complete Part III to provide any relevant information regarding these items.
b
If any of the boxes in line 1a are checked, did the organization follow a written policy regarding payment or reimbursement or provision of all of the expenses described above? If "No," complete Part III to explain .........
1b
 
 
2
Did the organization require substantiation prior to reimbursing or allowing expenses incurred by all
directors, trustees, officers, including the CEO/Executive Director, regarding the items checked in line 1a? ..
2
 
 
3
Indicate which, if any, of the following the filing organization used to establish the compensation of the
organization's CEO/Executive Director. Check all that apply. Do not check any boxes for methods
used by a related organization to establish compensation of the CEO/Executive Director, but explain in Part III.
4
During the year, did any person listed on Form 990, Part VII, Section A, line 1a with respect to the filing organization or a related organization:
a
Receive a severance payment or change-of-control payment? ................
4a
Yes
 
b
Participate in, or receive payment from, a supplemental nonqualified retirement plan? .........
4b
Yes
 
c
Participate in, or receive payment from, an equity-based compensation arrangement? .........
4c
 
No
If "Yes" to any of lines 4a-c, list the persons and provide the applicable amounts for each item in Part III.
Only 501(c)(3), 501(c)(4), and 501(c)(29) organizations must complete lines 5-9.
5
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any
compensation contingent on the revenues of:
a
The organization? ...........................
5a
 
No
b
Any related organization?
5b
 
No
If "Yes," on line 5a or 5b, describe in Part III.
6
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization pay or accrue any
compensation contingent on the net earnings of:
a
The organization?
6a
 
No
b
Any related organization? .........................
6b
 
No
If "Yes," on line 6a or 6b, describe in Part III.
7
For persons listed on Form 990, Part VII, Section A, line 1a, did the organization provide any non-fixed
payments not described in lines 5 and 6? If "Yes," describe in Part III ............
7
Yes
 
8
Were any amounts reported on Form 990, Part VII, paid or accured pursuant to a contract that was
subject to the initial contract exception described in Regulations section 53.4958-4(a)(3)? If "Yes," describe
in Part III .............................
8
 
No
9
If "Yes" on line 8, did the organization also follow the rebuttable presumption procedure described in Regulations section 53.4958-6(c)? .........................
9
 
 
For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50053T
Schedule J (Form 990) 2015

Schedule J (Form 990) 2015
Page 2
Part II
Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees. Use duplicate copies if additional space is needed.
For each individual whose compensation must be reported on Schedule J, report compensation from the organization on row (i) and from related organizations, described in the
instructions, on row (ii). Do not list any individuals that are not listed on Form 990, Part VII.
Note. The sum of columns (B)(i)-(iii) for each listed individual must equal the total amount of Form 990, Part VII, Section A, line 1a, applicable column (D) and (E) amounts for that individual.
(A) Name and Title (B) Breakdown of W-2 and/or 1099-MISC compensation (C) Retirement and other deferred compensation (D) Nontaxable
benefits
(E) Total of columns
(B)(i)-(D)
(F) Compensation in column(B) reported as deferred on prior Form 990
(i) Base compensation (ii) Bonus & incentive compensation (iii) Other reportable compensation
1PRESTON CAMPBELL MDPRESIDENT & CEO (AS OF 10/1) (i)

(ii)
284,125
-------------
144,690
189,461
-------------
93,316
23,384
-------------
7,565
131,869
-------------
51,623
29,049
-------------
0
657,888
-------------
297,194
62,015
-------------
30,544
2ROBERT BEALL PHDPRESIDENT & CEO (UNTIL 9/30) (i)

(ii)
412,228
-------------
206,690
276,031
-------------
135,956
886,949
-------------
436,584
67,754
-------------
20,043
21,099
-------------
0
1,664,061
-------------
799,273
215,564
-------------
106,173
3C RICHARD MATTINGLYEXEC VP & COO (i)

(ii)
316,273
-------------
0
273,763
-------------
0
2,128,337
-------------
0
61,263
-------------
0
7,283
-------------
0
2,786,919
-------------
0
682,855
-------------
0
4VERA H TWIGGEXECUTIVE VP, CFO & SECRETARY (i)

(ii)
309,865
-------------
0
167,491
-------------
0
22,316
-------------
0
78,919
-------------
0
29,049
-------------
0
607,640
-------------
0
39,236
-------------
0
5MAUREEN FRASERVP OF FIELD MANAGEMENT (i)

(ii)
238,124
-------------
0
36,699
-------------
0
696
-------------
0
30,611
-------------
0
14,774
-------------
0
320,904
-------------
0
0
-------------
0
6AMY DEMARIASR. VP OF COMMUNICATIONS (i)

(ii)
222,528
-------------
0
52,295
-------------
0
697
-------------
0
32,060
-------------
0
8,930
-------------
0
316,510
-------------
0
0
-------------
0
7CHRIS PENLAND PHDVICE PRESIDENT OF RESEARCH (i)

(ii)
110,143
-------------
110,143
28,664
-------------
12,284
704
-------------
0
27,060
-------------
0
26,244
-------------
0
192,815
-------------
122,427
0
-------------
0
8DAVID MCLOUGHLINSR. VP OF OPERATIONS (i)

(ii)
202,987
-------------
86,994
49,249
-------------
21,107
1,242
-------------
0
32,060
-------------
0
28,289
-------------
0
313,827
-------------
108,101
0
-------------
0
9WILLIAM SKACH MDSR. VP OF RESEARCH AFFAIRS (i)

(ii)
66,816
-------------
200,449
8,071
-------------
29,498
0
-------------
3,557
0
-------------
20,704
0
-------------
27,789
74,887
-------------
281,997
0
-------------
0
10MARY DWIGHTSVP POLICY & PATIENT ASSIST. (i)

(ii)
212,091
-------------
0
52,500
-------------
0
483
-------------
0
32,060
-------------
0
34,339
-------------
0
331,473
-------------
0
0
-------------
0
11BRUCE MARSHALL MDSR. VP OF CLINICAL AFFAIRS (i)

(ii)
116,754
-------------
233,509
13,000
-------------
77,062
0
-------------
3,564
0
-------------
32,060
0
-------------
0
129,754
-------------
346,195
0
-------------
0
Schedule J (Form 990) 2015

Schedule J (Form 990) 2015
Page 3
Part III
Supplemental Information
Provide the information, explanation, or descriptions required for Part I, lines 1a, 1b, 3, 4a, 4b, 4c, 5a, 5b, 6a, 6b, 7, and 8, and for Part II. Also complete this part for any additional information.
Return Reference Explanation
PART I, LINE 4A - SEVERANCE PAYMENT MR. MATTINGLY RECEIVED SEVERANCE PAY UPON HIS RETIREMENT AS EXECUTIVE VICE PRESIDENT AND COO. HE HAD EXTRAORDINARY SUCCESSES ACHIEVED OVER HIS 37-YEAR TENURE. THE SEVERANCE WAS REVIEWED AND OPINED ON AS REASONABLE FROM A COMPETITIVE MARKET PERSPECTIVE BY THE BOARDS INDEPENDENT COMPENSATION CONSULTANTS AND REVIEWED IN DETAIL AND APPROVED (IN THE MANNER SPECIFIED IN IRS REGULATIONS) BY THE BOARD'S INDEPENDENT COMPENSATION COMMITTEE. ADDITIONAL INFORMATION, INCLUDING THE DOLLAR AMOUNT OF THE AWARD, IS PROVIDED IN THE ADDITIONAL INFORMATION FOR SCHEDULE J, PART II, BELOW.
PART I, LINE 4B - SUPPLEMENTAL NONQUALIFIED RETIREMENT PLAN CERTAIN PERSONS LISTED IN FORM 990, PART VII, SECTION A PARTICIPATE IN A NONQUALIFIED DEFERRED COMPENSATION PLAN, UNDER WHICH INTERESTS ARE FORFEITED BY THE PARTICIPANT IF THE PARTICIPANT VOLUNTARILY TERMINATES EMPLOYMENT PRIOR TO THE DESIGNATED VESTING DATE. FURTHER INFORMATION ABOUT THE NONQUALIFIED DEFERRED COMPENSATION PLAN IN WHICH THOSE PERSONS PARTICIPATE, INCLUDING THE AMOUNT OF ANY PAYMENT MADE BY THE PLAN DURING THE REPORTING YEAR, IS PROVIDED IN THE ADDITIONAL INFORMATION FOR SCHEDULE J, PART II, BELOW. PART I, LINE 7: SEVERAL INDIVIDUALS LISTED IN FORM 990, PART VII, SECTION A, LINE 1A, (WHO ARE IDENTIFIED IN PART II, BELOW) PARTICIPATED IN THE FOUNDATION'S INCENTIVE COMPENSATION PLAN, FROM WHICH NON-FIXED PAYMENTS NOT DESCRIBED IN LINES 5 AND 6 WERE PAID. THE INCENTIVE COMPENSATION PLAN PAYS NON-FIXED PAYMENTS SUBJECT TO, AND BASED ON, THE ACHIEVEMENT OF ANNUAL PERFORMANCE OBJECTIVES ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD OF TRUSTEES. IN ADDITION, THE INCENTIVE COMPENSATION PLAN PAYS NON-FIXED PAYMENTS THAT RELATE TO A THREE-YEAR PERFORMANCE PERIOD, SUBJECT TO, AND BASED ON, THE ACHIEVEMENT OF LONG-TERM PERFORMANCE OBJECTIVES ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES (SUCH AS ROYALTY STREAMS, LUMP-SUM PAYMENTS, OTHER PROGRAM-RELATED INCOME, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES) RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. PART II: CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. EIN 13-1930701. (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $284,125; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $60,446, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $62,015, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $67,000; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $11,324, SECTION 457(B) PLAN (5) - $12,060; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) $27,060, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $63,020, SERP (4) - $41,789; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $19,409, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,550, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $7,090; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $62,015. CYSTIC FIBROSIS FOUNDATION THERAPEUTICS, INC. EIN 91-2059167. (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $144,690; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $29,772, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $30,544, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $33,000; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS - $1,625, SECTION 457(B) PLAN (5) - $5,940; (C) DEFERRED COMPENSATION: LONG-TERM INCENTIVE PLAN BENEFIT (6) - $31,040, SERP (4) - $20,583; (D) NONTAXABLE BENEFITS: $0; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $30,544. CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. EIN 13-1930701. (A) NAME: R. BEALL, PH.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $396,148, 401(K) BONUS $16,080; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $97,988, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $84,244, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $93,800; (B)(III) OTHER REPORTABLE COMPENSATION: HEALTH INSURANCE BENEFIT - $3,260, AUTOMOBILE ALLOWANCE - $4,824, OTHER BENEFITS - $8,925, ADDITIONAL AWARD (7) - $670,000, VESTED SERP ACCOUNT (8) $199,939; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) $27,060, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $40,694 ; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $13,683, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,550, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $4,866; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $215,564. CYSTIC FIBROSIS FOUNDATION THERAPEUTICS, INC. EIN 91-2059167. (A) NAME: R. BEALL, PH.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $198,770, 401(K) BONUS $7,920; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $48,263, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $41,493, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $46,200; (B)(III) OTHER REPORTABLE COMPENSATION: HEALTH INSURANCE BENEFIT - $1,606, AUTOMOBILE ALLOWANCE - $2,376, OTHER BENEFITS - $4,125, ADDITIONAL AWARD (7) - $330,000; VESTED SERP ACCOUNT (8) - $98,477; (C) DEFERRED COMPENSATION: LONG-TERM INCENTIVE PLAN BENEFIT (6) - $20,043; (D) NONTAXABLE BENEFITS: $0; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $106,173. CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. EIN 13-1930701. (A) NAME: R. MATTINGLY; (B)(I) BASE COMPENSATION: BASE SALARY - $316,273; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $80,081, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $93,682, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $100,000; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN (5) - $18,000; OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $4,384; SEVERANCE AWARD (10) - $1,142,587, VESTED SERP ACCOUNT (11) $963,366; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) $27,060, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $34,203; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $5,650, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $658, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $975; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $682,855. CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. EIN 13-1930701. (A) NAME: V. TWIGG; (B)(I) BASE COMPENSATION: BASE SALARY - $309,865; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) $58,255, LONG-TERM INCENTIVE PLAN PAYMENT, WHICH WAS PREVIOUSLY REPORTED (6) - $39,236, LONG-TERM INCENTIVE PLAN TREATMENT AWARD (3) - $70,000; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $4,316, SECTION 457(B) PLAN (5) - $18,000; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) $27,060, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $48,153, SERP (4) - $3,706; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $19,409, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $2,550, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $7,090; (F) COMPENSATION REPORTED IN PRIOR FORM 990 (9) - $39,236 (1) THIS IS AN AWARD SUBJECT TO, AND BASED ON, ACHIEVEMENT OF ANNUAL PERFORMANCE STANDARDS ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES (SUCH AS ROYALTY STREAMS, LUMP-SUM PAYMENTS, OTHER PROGRAM-RELATED INCOME, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES) RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. (2) THIS IS THE EMPLOYER CONTRIBUTION MADE UNDER THE CYSTIC FIBROSIS FOUNDATION 401(K) PLAN FOR THE 2015 PLAN YEAR. (3) THIS IS AN AWARD UNDER A PLAN THAT PAYS A SPECIFIED DOLLAR AMOUNT ONLY IF AND WHEN THE FDA APPROVES CERTAIN PRE-SPECIFIED TYPES OF THERAPIES. IN THE EVENT THE EMPLOYEE TERMINATES EMPLOYMENT PRIOR TO FDA APPROVAL OF THE SPECIFIED THERAPY TYPE AND PAYMENT OF THE AWARD, THE EMPLOYEE WILL FORFEIT HIS OR HER RIGHT TO RECEIVE PAYMENT, UNLESS TERMINATION IS DUE TO RETIREMENT OR DISABILITY. THE PLAN WILL TERMINATE ON DECEMBER 31, 2018 UNLESS THE FOUNDATION DETERMINES TO EXTEND THE PLAN.
PART II - CONTINUED (4) A. THIS IS AN UNVESTED EMPLOYER CONTRIBUTION TO THE SERP. B. SERP INTERESTS ARE FORFEITED BY THE PARTICIPANT IF THE PARTICIPANT VOLUNTARILY TERMINATES EMPLOYMENT PRIOR TO ATTAINING THE VESTING DATE DESIGNATED BY CFF (WHICH IS EITHER A SPECIFIED AGE OR DATE, DEPENDING ON THE PARTICIPANT). C. SERP INTERESTS ARE HELD IN A TRUST SUBJECT TO THE CLAIMS OF CFF'S BANKRUPTCY CREDITORS. IN THE EVENT OF A CFF BANKRUPTCY, PARTICIPANTS WOULD BECOME GENERAL UNSECURED CREDITORS OF CFF. D. THE SERP IS A NONQUALIFIED DEFERRED COMPENSATION PLAN. THIS MEANS THAT PARTICIPANTS DO NOT RECEIVE THE TAX BENEFITS AVAILABLE TO PARTICIPANTS IN TAX QUALIFIED RETIREMENT PLANS. FOR EXAMPLE, UNDER CURRENT LAW, INTERESTS UNDER SERPS ARE REPORTABLE AS TAXABLE COMPENSATION WHEN THEY BECOME VESTED, EVEN IF THOSE AMOUNTS ARE NOT YET PAYABLE TO THE PARTICIPANT (AND EVEN IF THOSE AMOUNTS ARE NEVER PAID TO THE PARTICIPANT). E. THE SERP'S DESIGN WAS REVIEWED AND OPINED UPON AS REASONABLE BY AN INDEPENDENT COMPENSATION CONSULTANT. SERP CONTRIBUTION AMOUNTS WERE DETERMINED BY AN INDEPENDENT ACTUARY. F. CFF RETAINS THE RIGHT TO AMEND OR TERMINATE THE SERP AT ANY TIME. (5) A. THIS IS A VESTED CONTRIBUTION TO THE 457(B) PLAN FOR THE REPORTING PERIOD. B. IN THE EVENT OF A CFF BANKRUPTCY, PARTICIPANTS ARE GENERAL UNSECURED CREDITORS OF CFF. C. DISTRIBUTIONS FROM THE 457(B) PLAN MAY NOT BE ROLLED-OVER TO AN IRA OR QUALIFIED PLAN (BUT MAY ONLY BE ROLLED-OVER TO ANOTHER 457(B) PLAN). D. THE 457(B) PLAN'S DESIGN WAS REVIEWED AND OPINED UPON AS REASONABLE BY AN INDEPENDENT COMPENSATION CONSULTANT. AN INDEPENDENT ACTUARY DEVELOPED THE CONTRIBUTION FORMULA PURSUANT TO WHICH 457(B) CONTRIBUTION AMOUNTS ARE DETERMINED. CONTRIBUTIONS TO THE 457(B) PLAN ARE SUBJECT TO ANNUAL IRS LIMITS (CURRENTLY $18,000). E. CFF RETAINS THE RIGHT TO AMEND OR TERMINATE THE 457(B) PLAN AT ANY TIME. (6) THIS PLAN PROVIDES FOR AWARDS THAT RELATE TO A THREE-YEAR PERFORMANCE PERIOD, SUBJECT TO, AND BASED ON, ACHIEVEMENT OF PERFORMANCE OBJECTIVES ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. ANY FINANCIAL PERFORMANCE OBJECTIVES ESTABLISHED UNDER THE INCENTIVE COMPENSATION PLAN DO NOT INCLUDE PROGRAM-RELATED REVENUES (SUCH AS ROYALTY STREAMS, LUMP-SUM PAYMENTS, OTHER PROGRAM-RELATED INCOME, AND SALES PROCEEDS FROM TRANSFER OF THE FOREGOING TO THIRD PARTIES) RELATED TO THE DEVELOPMENT AND APPROVAL OF CF DRUGS. EACH YEAR, A NEW THREE-YEAR PERFORMANCE PERIOD BEGINS. AS REQUIRED BY THE FORM 990 INSTRUCTIONS, THE AMOUNTS REPORTED IN COLUMN (C) ON THIS FORM 990 REFLECT AN ESTIMATE OF THE PORTION OF EACH AWARD THAT THE EXECUTIVE ACCRUED UNDER THE PLAN FOR PERFORMANCE IN 2015 (I.E., WITH RESPECT TO THE 2013-2015, 2014-2016 AND THE 2015-2017 PERFORMANCE PERIODS), BUT THE AMOUNTS REPORTED IN COLUMN (C) HAVE NOT BEEN EARNED, AWARDED OR PAID UNDER THE PLAN. THE INDIVIDUAL MUST BE EMPLOYED ON 12/31/15, 12/31/16 AND 12/31/17 TO BE ELIGIBLE TO RECEIVE FULL PAYMENT OF THE AWARD FOR THE 2013-2015, 2014-2016, AND THE 2015-2017 PERFORMANCE PERIODS, RESPECTIVELY. THE AWARD RELATING TO THE 3-YEAR PERFORMANCE PERIOD ENDING 12/31/14 WAS PAID IN 2015, AND IS PROPERLY REPORTED AGAIN (AS COMPENSATION IN COLUMN (B)(II)) ON THIS FORM 990 (EVEN THOUGH AN ESTIMATE OF THE PORTION OF THIS AWARD THAT THE EXECUTIVE ACCRUED UNDER THE PLAN FOR PERFORMANCE IN 2014, 2013 AND 2012 WAS REPORTED IN COLUMN (C) OF THE FORM 990 FOR EACH OF THOSE YEARS). (7) THIS WAS AN AWARD PAID TO DR. BEALL UPON HIS RETIREMENT AS CEO OF CFF, FULFILLING THE TERMS OF HIS CONTRACT AND RECOGNIZING THE SIGNIFICANT CONTRIBUTIONS AND YEARS OF SERVICE (21-YEARS AS CEO AND 14-YEARS AS EXECUTIVE VICE PRESIDENT). THE AWARD WAS PAID BY CYSTIC FIBROSIS FOUNDATION THERAPEUTICS, INC. ("CFFT"), A RELATED ORGANIZATION, WITH RESPECT TO HIS SERVICE AS AN OFFICER OF CFFT, AND BY CFF WITH RESPECT TO HIS SERVICE AS AN OFFICER OF CFF. THE AWARD WAS REVIEWED AND OPINED ON AS REASONABLE AND MARKET-COMPETITIVE BY THE CFF BOARDS INDEPENDENT COMPENSATION CONSULTANTS AND REVIEWED IN DETAIL AND APPROVED (IN THE MANNER SPECIFIED IN IRS REGULATIONS) BY THE CFF BOARD'S INDEPENDENT COMPENSATION COMMITTEE. (8) THIS AMOUNT BECAME VESTED AND TAXABLE IN 2015 UNDER THE SERP DESCRIBED IN FOOTNOTE (4) ABOVE, UNDER WHICH DR. BEALL RECEIVED CONTRIBUTIONS FROM 2013-2015. AS REQUIRED, THE CONTRIBUTIONS TO THIS SERP THAT GENERATED THE AMOUNT REPORTED IN COLUMN B(III) OF THIS FORM 990 WERE REPORTED ON PRIOR YEARS' FORM 990S IN COLUMN (C). (9) THIS AMOUNT, ALTHOUGH ALSO INCLUDED IN COLUMN B OF THIS FORM 990, HAS ALREADY BEEN REPORTED AS COMPENSATION ON PRIOR YEARS' FORM 990S, AND THEREFORE (AS REQUIRED BY THE INSTRUCTIONS) IS DOUBLE-REPORTED HERE. (10) THIS WAS SEVERANCE PAID TO MR. MATTINGLY BY CFF UPON HIS RETIREMENT AS EXECUTIVE VICE PRESIDENT AND COO OF CFF, AFTER A 37-YEAR TENURE. THE AWARD WAS REVIEWED AND OPINED ON AS REASONABLE FROM A MARKET-COMPETITIVE STANDPOINT BY THE CFF BOARDS INDEPENDENT COMPENSATION CONSULTANTS AND REVIEWED IN DETAIL AND APPROVED (IN THE MANNER SPECIFIED IN IRS REGULATIONS) BY THE CFF BOARD'S INDEPENDENT COMPENSATION COMMITTEE. (11) THIS AMOUNT BECAME VESTED AND TAXABLE IN 2015 UNDER THE SERP DESCRIBED IN FOOTNOTE (4) ABOVE, UNDER WHICH MR. MATTINGLY RECEIVED CONTRIBUTIONS FROM 2007-2015. AS REQUIRED, THE CONTRIBUTIONS TO THIS SERP THAT GENERATED THE AMOUNT REPORTED IN COLUMN B(III) OF THIS FORM 990 WERE REPORTED ON PRIOR YEARS' FORM 990S IN COLUMN (C).
Schedule J (Form 990) 2015
Additional Data


Software ID:  
Software Version:  
SCHEDULE O
(Form 990 or 990-EZ)

Department of the Treasury
Internal Revenue Service
Supplemental Information to Form 990 or 990-EZ

Complete to provide information for responses to specific questions on
Form 990 or 990-EZ or to provide any additional information.
MediumBullet Attach to Form 990 or 990-EZ.
MediumBullet Information about Schedule O (Form 990 or 990-EZ) and its instructions is at
www.irs.gov/form990.
OMB No. 1545-0047
2015
Open to Public
Inspection
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Return Reference Explanation
SIGNIFICANT CHANGES TO GOVERNING DOCUMENTS PART VI, SECTION A, LINE 4 DURING 2015, THE CYSTIC FIBROSIS FOUNDATION AMENDED ITS BYLAWS TO 1) ADD TWO VOTING "SPECIAL MEMBER" POSITIONS ON THE BOARD FOR INDIVIDUALS WHO HAVE CERTAIN SPECIALIZED SKILLS AND 2) AUTHORIZE THE CHAIRMAN TO DESIGNATE A NON-VOTING ADVISOR(S) TO ANY COMMITTEE.
REVIEW OF 990 BY GOVERNING BODY PART VI, SECTION B, LINE 12C The Cystic Fibrosis Foundation Board of Trustees receives a draft of the Form 990 prior to its being filed, with sufficient time for review and comment allowed. The Compensation Committee of the Board of Trustees and the Foundations ERISA attorneys review the executive compensation sections of the Form 990. The Audit Committee of the Board of Trustees also reviews the Form 990 as part of its chartered responsibilities. In all cases the Cystic Fibrosis Foundation Board of Trustees receives a complete copy of the final Form 990 before it is filed.
CONFLICT OF INTEREST MONITORING PART VI, SECTION B, LINE 12C A CONFLICT OF INTEREST DISCLOSURE STATEMENT IS COMPLETED ANNUALLY BY EACH BOARD MEMBER, OFFICER, AND KEY EMPLOYEE. DISCLOSURES PROVIDED ARE REPORTED TO THE NOMINATING AND GOVERNANCE COMMITTEE, THE AUDIT COMMITTEE AND THE BOARD OF TRUSTEES. AS REQUIRED WITHIN THE BYLAWS, ANY POTENTIAL CONFLICTS OF INTEREST MUST BE REPORTED TO THE BOARD AS THEY ARISE. WHEN ANY MATTER IS DEEMED A POTENTIAL CONFLICT OF INTEREST AND REQUIRES ACTION BY THE BOARD OF TRUSTEES, THE INTERESTED TRUSTEE OR OFFICER IS REQUIRED TO RETIRE FROM THE ROOM IN WHICH THE BOARD OR ITS COMMITTEE IS MEETING, MAY NOT PARTICIPATE IN THE FINAL DELIBERATION OF THE MATTER, AND MAY NOT VOTE ON THE MATTER. THE ORGANIZATION ENFORCED THE POLICY DURING 2015 AND HAD NO CONFLICTS OF INTEREST AS DEFINED BY THE POLICY.
DETERMINING COMPENSATION PART VI, SECTION B, LINE 15A AND 15B THE TOTAL COMPENSATION OF EXECUTIVES AT THE CYSTIC FIBROSIS FOUNDATION IS SPECIFICALLY DESIGNED TO ATTRACT AND RETAIN THE HIGHEST QUALIFIED EXECUTIVE AND MEDICAL TALENT TO FULFILL THE CRITICALLY IMPORTANT MISSION OF CURING CYSTIC FIBROSIS AND PROVIDING ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES. THE INDEPENDENT COMPENSATION COMMITTEE OF THE CF FOUNDATION'S BOARD OF TRUSTEES FOLLOWS THE PROCESS DESCRIBED IN THE IRS INTERMEDIATE SANCTIONS RULES WHEN DETERMINING COMPENSATION. SPECIFICALLY, THE COMMITTEE: (1) IS COMPOSED ENTIRELY OF NON-EMPLOYEE VOLUNTEER DIRECTORS WHO HAVE NO FAMILIAL, BUSINESS OR SIGNIFICANT PERSONAL RELATIONSHIPS WITH THE CF FOUNDATION OR ITS EXECUTIVES. (2) ASSESSES THE SHORT-TERM AND LONG-TERM CONTRIBUTION AND PERFORMANCE OF EACH EXECUTIVE IN MEETING VERY DEFINITIVE AND QUANTIFIABLE OBJECTIVES FOCUSED ON THE CF FOUNDATION'S MISSION SUCCESS. (3) ENGAGES AN INDEPENDENT COMPENSATION CONSULTING FIRM TO COMPILE APPROPRIATE COMPARABILITY DATA (INCLUDING COMPENSATION MARKET INFORMATION FOR PEERS WITH WHOM THE CF FOUNDATION COMPETES FOR EXECUTIVE TALENT) FOR COMMITTEE RELIANCE. THE COMMITTEE MEETS WITH REPRESENTATIVES OF THE CONSULTING FIRM TO REVIEW THIS DATA IN DETAIL. (4) REVIEWS ALL ELEMENTS OF EACH EXECUTIVES TOTAL COMPENSATION, INCLUDING BUT NOT LIMITED TO BASE SALARY, BONUSES, PERQUISITES, FRINGE BENEFITS, AND INCENTIVE AND DEFERRED COMPENSATION ARRANGEMENTS. UPON THE EXECUTIVES HIRE, AND AT EACH POINT IN TIME THEREAFTER AT WHICH A NEW OR REVISED COMPENSATION ARRANGEMENT IS UNDER CONSIDERATION WITH RESPECT TO THE EXECUTIVE, THE COMMITTEE MEETS WITH ITS INDEPENDENT COMPENSATION CONSULTING FIRM BEFORE THE ARRANGEMENT IS IMPLEMENTED TO EVALUATE THE REASONABLENESS OF THE ARRANGEMENT BY COMPARING BOTH THE ARRANGEMENT ITSELF AND THE EXECUTIVES ENTIRE COMPENSATION PACKAGE TO COMPENSATION PACKAGES PAID BY SIMILARLY SITUATED ORGANIZATIONS FOR FUNCTIONALLY COMPARABLE POSITIONS. (5) DOCUMENTS, CONCURRENTLY WITH ITS DETERMINATION, THE BASIS FOR ITS DETERMINATION IN THE MINUTES OF ITS MEETING. THESE MINUTES ARE REVIEWED, REVISED IF NECESSARY AND APPROVED AT THE FOLLOWING MEETING OF THE COMMITTEE. (6) OBTAINS A WRITTEN LEGAL OPINION CONCERNING THE COMMITTEES COMPLIANCE WITH THE IRS INTERMEDIATE SANCTIONS RULES. THE PROCESS DESCRIBED ABOVE WAS USED TO ESTABLISH COMPENSATION FOR THE FOLLOWING OFFICERS OR KEY EMPLOYEES OF THE ORGANIZATION: PRESIDENT & CEO EXECUTIVE VICE PRESIDENT & COO EXECUTIVE VICE PRESIDENT, CFO AND SECRETARY VICE PRESIDENT OF FIELD MANAGEMENT SR. VICE PRESIDENT OF OPERATIONS THE PROCESS WAS LAST UNDERTAKEN IN 2014, WITH THE EXCEPTION OF THAT FOR THE CEO POSITION WHICH WAS LAST CONDUCTED IN 2015.
PUBLIC INSPECTION PART VI, SECTION C, LINE 19 FORMS 1023 AND 990-T FOR THE ORGANIZATION WERE AVAILABLE ON ITS WEBSITE, CFF.ORG AND THE ORGANIZATION'S WEBSITE PROVIDED A DIRECT LINK TO ITS FORM 990 ON GUIDESTAR.ORG. THE FOUNDATIONS GOVERNING DOCUMENTS (BYLAWS AND ARTICLES OF INCORPORATION) WERE AVAILABLE UPON REQUEST BY CONTACTING THE NATIONAL OFFICE OF THE CYSTIC FIBROSIS FOUNDATION IN WRITING OR BY PHONE. INFORMATION ON HOW TO OBTAIN THE GOVERNING DOCUMENTS WAS AVAILABLE ON THE FOUNDATIONS WEBSITE, WWW.CFF.ORG, DURING 2015. THE BOARD AND OFFICER CONFLICT OF INTEREST POLICY AND THE AUDITED FINANCIAL STATEMENTS WERE AVAILABLE ON THE FOUNDATIONS WEBSITE, WWW.CFF.ORG, DURING 2015.
PART VII, SECTION A HOURS FOR RELATED ORGANIZATIONS THE FOLLOWING IS AN ESTIMATE OF THE AVERAGE HOURS PER WEEK DEVOTED TO RELATED ORGANIZATIONS BY THE OFFICERS: CYSTIC FIBROSIS CYSTIC FIBROSIS FOUNDATION GROUP FOUNDATION RETURN FOR THE TITLE THERAPEUTICS, INC CHAPTERS ----- ------------- ---------------------- PRESIDENT & CEO 20 4 EXEC. VICE PRESIDENT & COO 5 5 EXEC. VICE PRESIDENT & CFO 5 5
FORM 990, PART IX ON THE PRIOR YEAR RETURN, EXPENSES THAT TRULY BELONGED ON LINES 11G-14 WERE TRANSPOSED AND LISTED ON LINES 12-15 IN ERROR. THE 2015 FORM 990 ACCURATELY REFLECTS THE CLASSIFICATION OF THESE EXPENSES.
FORM 990, PART X, LINE 27 UNRESTRICTED NET ASSETS BOARD DESIGNATED THE FOUNDATIONS UNRESTRICTED NET ASSETS TOTALED $3,664,492,149 AS OF DECEMBER 31, 2015. OF THIS AMOUNT, THE FOUNDATIONS BOARD OF TRUSTEES HAS DESIGNATED $3,300,000,000 TO BE SPENT IN SUPPORT OF THE MISSION OF THE FOUNDATION OVER THE LONG TERM.
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 51056K
Schedule O (Form 990 or 990-EZ) 2015


Additional Data


Software ID:  
Software Version:  
SCHEDULE R
(Form 990)

Department of the Treasury
Internal Revenue Service
Related Organizations and Unrelated Partnerships
MediumBulletComplete if the organization answered "Yes" on Form 990, Part IV, line 33, 34, 35b, 36, or 37.
MediumBulletAttach to Form 990.
MediumBullet
Information about Schedule R (Form 990) and its instructions is at www.irs.gov/form990.

OMB No. 1545-0047
2015
Open to Public Inspection
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Part I
Identification of Disregarded Entities Complete if the organization answered "Yes" on Form 990, Part IV, line 33.
(a)
Name, address, and EIN (if applicable) of disregarded entity


(b)
Primary activity


(c)
Legal domicile (state
or foreign country)

(d)
Total income


(e)
End-of-year assets


(f)
Direct controlling
entity

(1) CYSTIC FIBROSIS PATIENT ASSISTANCE FDN
6931 ARLINGTON RD
BETHESDA,MD20814
90-0350985
PATIENT ASST DE 100,000 82,068 CFF-HQ
 










Part II
Identification of Related Tax-Exempt Organizations Complete if the organization answered "Yes" on Form 990, Part IV, line 34 because it had one or more related tax-exempt organizations during the tax year.
(a)
Name, address, and EIN of related organization


(b)
Primary activity


(c)
Legal domicile (state
or foreign country)

(d)
Exempt Code section


(e)
Public charity status
(if section 501(c)(3))

(f)
Direct controlling
entity

(g)
Section 512(b)(13) controlled entity?
Yes No
(1)CYSTIC FIBROSIS FOUNDATION THERAPEUTICS
6931 ARLINGTON RD

BETHESDA,MD20814
91-2059167
RESEARCH MD 501(c)(3) 11A CFF-HQ
 
Yes
 
(2)CYSTIC FIBROSIS FOUNDATION GROUP
6931 ARLINGTON RD

BETHESDA,MD20814
13-6161105
EDUCATION DE 501(c)(3) 7 CFF-HQ
 
Yes
 










For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50135Y
Schedule R (Form 990) 2015
Schedule R (Form 990) 2015
Page 2
Part III
Identification of Related Organizations Taxable as a Partnership Complete if the organization answered "Yes" on Form 990, Part IV, line 34 because it had one or more related organizations treated as a partnership during the tax year.
(a)
Name, address, and EIN of
related organization



(b)
Primary activity




(c)
Legal
domicile
(state or foreign
country)


(d)
Direct controlling
entity



(e)
Predominant income(related, unrelated, excluded from tax under sections 512-514)

(f)
Share of total income




(g)
Share of end-of-year
assets



(h)
Disproprtionate allocations?




(i)
Code V-UBI
amount in box 20 of
Schedule K-1
(Form 1065)
(j)
General or
managing
partner?



(k)
Percentage
ownership


Yes No Yes No












Part IV
Identification of Related Organizations Taxable as a Corporation or Trust Complete if the organization answered "Yes" on Form 990, Part IV, line 34 because it had one or more related organizations treated as a corporation or trust during the tax year.
(a)
Name, address, and EIN of
related organization
(b)
Primary activity
(c)
Legal
domicile
(state or foreign
country)
(d)
Direct controlling
entity
(e)
Type of entity
(C corp, S corp,
or trust)
(f)
Share of total income
(g)
Share of end-of-year
assets
(h)
Percentage
ownership
(i)
Section 512(b)(13) controlled entity?
Yes No












Schedule R (Form 990) 2015
Schedule R (Form 990) 2015
Page 3
Part V
Transactions With Related Organizations Complete if the organization answered "Yes" on Form 990, Part IV, line 34, 35b, or 36.
Note. Complete line 1 if any entity is listed in Parts II, III, or IV of this schedule.
Yes
No
1 During the tax year, did the orgranization engage in any of the following transactions with one or more related organizations listed in Parts II-IV?
a Receipt of (i) interest, (ii) annuities, (iii) royalties, or (iv) rent from a controlled entity .....................
1a
 
No
b Gift, grant, or capital contribution to related organization(s) ............................
1b
Yes
 
c Gift, grant, or capital contribution from related organization(s) ............................
1c
Yes
 
d Loans or loan guarantees to or for related organization(s) ............................
1d
 
No
e Loans or loan guarantees by related organization(s) ............................
1e
 
No
f Dividends from related organization(s) ............................
1f
 
No
g Sale of assets to related organization(s) ............................
1g
 
No
h Purchase of assets from related organization(s) ............................
1h
 
No
i Exchange of assets with related organization(s) ............................
1i
 
No
j Lease of facilities, equipment, or other assets to related organization(s) .......................
1j
 
No
k Lease of facilities, equipment, or other assets from related organization(s) ......................
1k
 
No
l Performance of services or membership or fundraising solicitations for related organization(s) .....................
1l
 
No
m Performance of services or membership or fundraising solicitations by related organization(s) .................
1m
 
No
n Sharing of facilities, equipment, mailing lists, or other assets with related organization(s) ...................
1n
Yes
 
o Sharing of paid employees with related organization(s) ............................
1o
Yes
 
p Reimbursement paid to related organization(s) for expenses ............................
1p
 
No
q Reimbursement paid by related organization(s) for expenses ............................
1q
 
No
r Other transfer of cash or property to related organization(s) ............................
1r
 
No
s Other transfer of cash or property from related organization(s) ............................
1s
 
No
2
If the answer to any of the above is "Yes," see the instructions for information on who must complete this line, including covered relationships and transaction thresholds.
(a)
Name of related organization
(b)
Transaction
type (a-s)
(c)
Amount involved
(d)
Method of determining amount involved
(1) CYSTIC FIBROSIS FOUNDATION THERAPEUTICS

B 86,230,120 FMV
(2) CYSTIC FIBROSIS FOUNDATION GROUP

C 86,659,882 FMV
(3) CYSTIC FIBROSIS FOUNDATION THERAPEUTICS

N 1,426,717 COST
(4) CYSTIC FIBROSIS FOUNDATION THERAPEUTICS

O 4,638,063 COST
(5) CYSTIC FIBROSIS FOUNDATION GROUP

N 246,324 COST
(6) CYSTIC FIBROSIS FOUNDATION GROUP

O 10,336,088 COST
Schedule R (Form 990) 2015
Schedule R (Form 990) 2015
Page 4
Part VI
Unrelated Organizations Taxable as a Partnership Complete if the organization answered "Yes" on Form 990, Part IV, line 37.
Provide the following information for each entity taxed as a partnership through which the organization conducted more than five percent of its activities (measured by total assets or gross revenue) that was not a related organization. See instructions regarding exclusion for certain investment partnerships.
(a)
Name, address, and EIN of entity
(b)
Primary activity
(c)
Legal domicile
(state or foreign
country)
(d)
Predominant income (related, unrelated, excluded from tax under sections 512-514)

(e)
Are all partners
section
501(c)(3)
organizations?
(f)
Share of total income




(g)
Share of
end-of-year
assets
(h)
Disproprtionate allocations?
(i)
Code V-UBI
amount in box 20
of Schedule K-1
(Form 1065)
(j)
General or
managing
partner?
(k)
Percentage
ownership


Yes No Yes No Yes No






























Schedule R (Form 990) 2015
Schedule R (Form 990) 2015
Page 5
Part VII
Supplemental Information
Provide additional information for responses to questions on Schedule R (see instructions).
Return Reference Explanation
Schedule R (Form 990) 2015

Additional Data


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