Form990
Click to see attachment
Department of the Treasury
Internal Revenue Service
Return of Organization Exempt From Income Tax
Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code (except black lung benefit trust or private foundation)

MediumBullet The organization may have to use a copy of this return to satisfy state reporting requirements.
OMB No. 1545-0047
2011
Open to Public Inspection
A For the calendar year, or tax year beginning 01-01-2011 and ending 12-31-2011
BCheck if applicable:
CName of organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Doing Business As
 
 
Number and street (or P.O. box if mail is not delivered to street address)
6931 ARLINGTON ROAD
 
Room/suite
City or town, state or country, and ZIP + 4
BETHESDA, MD20814
D Employer identification number

13-1930701
E Telephone number

G Gross receipts $ 241,014,092
F Name and address of principal officer:
ROBERT J BEALL PHD
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
affiliates?
H(b)
Are all affiliates 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 ASSURE THE DEVELOPMENT OF THE MEANS TO CURE AND CONTROL CYSTIC FIBROSIS (CF) AND TO IMPROVE THE QUALITY OF LIFE FOR THOSE WITH THE DISEASE.
2 Check this box MediumBullet
3 Number of voting members of the governing body (Part VI, line 1a)..... 3 18
4 Number of independent voting members of the governing body (Part VI, line 1b) .... 4 17
5 Total number of individuals employed in calendar year 2011 (Part V, line 2a) ... 5 319
6 Total number of volunteers (estimate if necessary) .... 6 250,000
7a Total unrelated business revenue from Part VIII, column (C), line 12 .. 7a 0
b Net unrelated business taxable income from Form 990-T, line 34 .. 7b 0
Revenues; Prior Year Current Year
8 Contributions and grants (Part VIII, line 1h) ......... 106,799,244 101,016,403
9 Program service revenue (Part VIII, line 2g) ......... 21,411,864 26,269,945
10 Investment income (Part VIII, column (A), lines 3, 4, and 7d ) .... 5,617,212 7,266,699
11 Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e) 639,501 2,027,137
12 Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12)................... 134,467,821 136,580,184
Expenses; 13 Grants and similar amounts paid (Part IX, column (A), lines 1–3 )... 21,487,961 74,501,565
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) 24,796,813 27,272,258
16a Professional fundraising fees (Part IX, column (A), line 11e)..... 0 0
b Total fundraising expenses (Part IX, column (D), line 25) MediumBullet10,319,779    
17 Other expenses (Part IX, column (A), lines 11a–11d, 11f–24f).... 21,688,722 23,947,791
18 Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25) 67,973,496 125,721,614
19 Revenue less expenses. Subtract line 18 from line 12....... 66,494,325 10,858,570
Net Assets or Fund Balances; Beginning of Current Year End of Year
20 Total assets (Part X, line 16)............. 221,040,934 216,321,364
21 Total liabilities (Part X, line 26)............. 32,747,225 40,872,449
22 Net assets or fund balances. Subtract line 21 from line 20..... 188,293,709 175,448,915
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 Right pointing arrowhead image

Firm's EIN Right pointing arrowhead image
Firm's address Right pointing arrowhead image



Phone no.
May the IRS discuss this return with the preparer shown above? See instructions .........bullet
For Paperwork Reduction Act Notice, see the separate instructions.
Cat. No. 11282Y
Form 990 (2011)
Form 990 (2011)
Page 2
Part III
Statement of Program Service Accomplishments
Check if Schedule O contains a response to any question in this Part III .........
1
Briefly describe the organization’s mission: THE MISSION OF THE CYSTIC FIBROSIS FOUNDATION, A NONPROFIT DONOR SUPPORTED ORGANIZATION, IS TO ASSURE THE DEVELOPMENT OF THE MEANS TO CURE AND CONTROL CYSTIC FIBROSIS (CF) AND TO IMPROVE THE QUALITY OF LIFE FOR THOSE WITH THE DISEASE. A LIFE SHORTENING GENETIC DISEASE, CF AFFECTS THE LUNGS AND DIGESTIVE SYSTEMS OF NEARLY 30,000 CHILDREN AND YOUNG ADULTS 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 and section 4947(a)(1) trusts 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 $ 87,231,930 including grants of $ 73,296,331 ) (Revenue $ 1,648,930 )
MEDICAL PROGRAMS - SINCE 1955, THE CYSTIC FIBROSIS FOUNDATION HAS BEEN DEDICATED TO CURING AND CONTROLLING CYSTIC FIBROSIS (CF). 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 110 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. A) IN 2011, PHASE 3 CLINICAL TRIALS OF VX-770 SHOWED PROFOUND RESULTS. THOSE RECEIVING THE DRUG DEMONSTRATED THE HIGHEST INCREASE ON A LUNG FUNCTION TEST SEEN IN ANY CLINICAL TRIAL OF A CF DRUG. A NEW DRUG APPLICATION TO THE FDA FOR VX-770 UNDER THE TRADE NAME KALYDECO WAS SUBMITTED BY VERTEX PHARMACEUTICALS. B) RESULTS FROM THE FIRST PART OF AN ONGOING PHASE 2 TRIAL TESTING KALYDECO IN COMBINATION WITH VX-809 SHOW PROMISING RESULTS IN PEOPLE WITH THE MOST COMMON CF MUTATION, DELTA F508. C) THE MEDIAN PREDICTED AGE OF SURVIVAL FOR A PERSON WITH CF IS IN THE LATE 30S. MORE THAN 45 PERCENT OF PEOPLE WITH CF ARE AGE 18 OR OLDER. D) MEDICAL PROGRAMS CONSIST OF APPROXIMATELY 360 GRANTS AND OTHER COSTS TO SUPPORT SCIENTIFIC STUDIES/INVESTIGATIONS AND CYSTIC FIBROSIS CENTERS. APPROXIMATELY 220 GRANTS TOTALING $12.5 MILLION WERE AWARDED TO CYSTIC FIBROSIS CARE CENTERS SERVING APPROXIMATELY 27,000 PATIENTS.
4b (Code:   ) (Expenses $ 10,499,220 including grants of $ 1,205,234 ) (Revenue $ 24,621,015 )
CYSTIC FIBROSIS FOUNDATION PHARMACY, LLC (CFFP) PROVIDES PROGRAM MANAGEMENT SERVICES TO CYSTIC FIBROSIS PATIENT ASSISTANCE FOUNDATION, LLC (CFPAF) AND PROGRAM MANAGEMENT SERVICES AND LICENSING TO CYSTIC FIBROSIS SERVICES, INC. (CFS). IT PROVIDES AVAILABILITY AND ACCESS TO CYSTIC FIBROSIS MEDICATIONS, AS WELL AS ASSISTANCE WITH THE COMPLEX INSURANCE ISSUES FACED IN OBTAINING THESE MEDICATIONS. CFFP PROVIDES PERSONALIZED SERVICE, PATIENT ADVOCACY, PATIENT EDUCATION AND REIMBURSEMENT SUPPORT TO THE CF COMMUNITY. IN 2011, CFFP SERVED 10,352 PATIENTS. CFFP FULFILLED 82,586 ORDERS TO CF PATIENTS UNDER MANUFACTURER PROGRAMS TO ASSIST PATIENTS IN NEED. CFFP STAFF ASSISTED CF PATIENTS WITH 188,592 PRESCRIPTIONS IN 2011 BY FILING PRIMARY, SECONDARY AND TERTIARY INSURANCE CLAIMS, AS NEEDED. CYSTIC FIBROSIS PATIENT ASSISTANCE FOUNDATION, LLC (CFPAF) RESPONDED TO 6,817 CALLS FOR ASSISTANCE AND PROVIDED $1,205,234 IN PATIENT ASSISTANCE GRANTS AND CASE MANAGEMENT TO 853 CF PATIENTS IN NEED DURING 2011.
4c (Code:   ) (Expenses $ 9,558,413 including grants of $ 0 ) (Revenue $ 0 )
dPUBLIC 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 CF PATIENTS AND THEIR FAMILIES, MEDICAL PROFESSIONALS AND THE GENERAL PUBLIC REGARDING THE DISEASE. IN 2011, THERE WERE 23 PUBLICATIONS, 18 WEBCASTS AND 37 VIDEOS PRODUCED AND MADE AVAILABLE FOR PATIENTS, FAMILIES, MEDICAL PROFESSIONALS, AND THE GENERAL PUBLIC. YEAR-ROUND 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 2011, OVER 2,180,000 UNIQUE VISITORS CAME TO THE ORGANIZATION'S WEBSITE.
4d Other program services (Describe in Schedule O.)
(Expenses $ 2,724,489 including grants of $ 0 ) (Revenue $ 0 )
4e Total program service expensesMediumBullet$ 110,014,052
Form 990 (2011)
Form 990 (2011)
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? 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? 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 III........................
5
 
 
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; 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, line10? 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 VII.Click 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 VIII.Click 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 IX.Click 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 X.Click 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 X.Click to see attachment
11f
 
No
12a
Did the organization obtain separate, independent audited financial statements for the tax year?
If “Yes,” complete Schedule D, Parts XI, XII, and XIII 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, XII, and XIII 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, Part I......... 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 assistance to any organization or entity located outside the U.S.? If “Yes,” complete Schedule F, Part II.. 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 assistance to individuals located outside the U.S.? If “Yes,” complete Schedule F, Part III.. 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
17
 
No
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..........
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...................
19
 
No
20a
Did the organization operate one or more hospitals? If “Yes,” complete Schedule H.....
20a
 
No
b
If “Yes” to line 20a, did the organization attach a copy of its audited financial statement to this return? Note. All Form 990 filers that operated one or more hospitals must attach audited financial statements.
20b
 
 
Form 990 (2011)
Form 990 (2011)
Page 4
Part IV
Checklist of Required Schedules (continued)
21
Did the organization report more than $5,000 of grants and other assistance to any government or organization in the United States 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 and other assistance to individuals in the United States 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, questions 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 questions 24b–24d and complete Schedule K. If “No,” go to line 25................
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) and 501(c)(4) 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
Was a loan to or by a current or former officer, director, trustee, key employee, highly compensated employee, or disqualified person outstanding as of the end of the organization’s tax year? 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 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 MClick to see attachment
29
Yes
 
30
Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If “Yes,” complete Schedule M............ Click to see attachment
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, Parts II, III, IV, and 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 11 and 19? Note. All Form 990 filers are required to complete Schedule O. ............
38
Yes
 
Form 990 (2011)
Form 990 (2011)
Page 5
Part V
Statements Regarding Other IRS Filings and Tax Compliance
Check if Schedule O contains a response to any question in this Part V .........
Yes
No
1a
Enter the number reported in Box 3 of Form 1096. Enter -0- if not applicable. .......
1a
195
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
 
 
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
319
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
 
No
b
If “Yes,” has it filed a Form 990-T for this year? If “No,” provide an explanation in Schedule O.....
3b
 
 
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 or securities account)?.......................
4a
 
No
b
If "Yes," enter the name of the foreign country: MediumBullet
See instructions for filing requirements for Form TD F 90-22.1, Report of Foreign Bank and Financial Accounts.
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?..........
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 and section 509(a)(3) supporting organizations. Did the supporting organization, or a donor advised fund maintained by a sponsoring organization, have excess business holdings at any time during the year?................
8
 
 
9
Sponsoring organizations maintaining donor advised funds.
a
Did the organization make any taxable distributions under section 4966?.........
9a
 
 
b
Did the 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. All 501(c)(29) organizations must list in Schedule O each state in which they are licensed to issue qualified health plans, the amount of reserves required by each state, and the amount of reserves the organization allocated to each state.
13a
 
 
b
Enter the aggregate 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 aggregate amount of reserves on hand.
13c
 
14a
Did the organization receive any payments for indoor tanning services during the tax year?.....
14a
 
 
b
If "Yes," has it filed a Form 720 to report these payments? If “No,” provide an explanation in Schedule O..
14b
 
 
Form 990 (2011)
Form 990 (2011)
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 to any question 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
If the governing body delegated broad authority to an executive committee or similar committee, explain in Schedule O.
1a
18
b
Enter the number of voting members included in line 1a, above, who are independent .................
1b
17
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
 
No
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 the 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 , AZ , AR , CA , CT , FL , GA , HI , IL , IN , KS , KY , MD , MA , MI , MN , MS , NH , NJ , NM , NY , OH , 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, physical address, and telephone number of the person who possesses the books and records of the organization: MediumBullet
ROBERT J BEALL PHD
6931 ARLINGTON ROAD STE 200
BETHESDA,MD20814
(301) 951-4422
Form 990 (2011)
Form 990 (2011)
Page 7
Part VII
Compensation of Officers, Directors,Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors
Check if Schedule O contains a response to any question 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, and current key employees. 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 organizations compensated any current or former officer, director, or trustee.
(A)
Name and Title 		(B)
Average hours per week (describe hours for related organizations in Schedule O) 		(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; Officer; Key Employee; Highest compensated employee; Former;
(1) J Taylor Crandall
Trustee
 3.0 X           0 0 0
(2) Michael L Beatty
Trustee
 3.0 X           0 0 0
(3) Richard L Dandurand
Vice Chairman
 5.0 X           0 0 0
(4) Richard J Gray
Trustee
 3.0 X           0 0 0
(5) Barry M Gump
Trustee
 3.0 X           0 0 0
(6) Susan L Hook
Vice Chair
 5.0 X           0 0 0
(7) Catherine C McLoud
Chair
 7.0 X           0 0 0
(8) Chad T Moore
Trustee
 3.0 X           0 0 0
(9) David A Mount
Trustee
 5.0 X           0 0 0
(10) Gary B Sabin
Executive Vice Chairman
 5.0 X           0 0 0
(11) Christie L Shaffer PHD
Trustee
 3.0 X           0 0 0
(12) Steven Shak MD
Trustee
 3.0 X           0 0 0
(13) Charles J Thayer
Treasurer
 3.0 X           0 0 0
(14) Theodore J Torphy PhD
Trustee
 3.0 X           0 0 0
(15) Amy S Weinberg
Trustee
 3.0 X           0 0 0
(16) Paul W Whetsell
Trustee
 5.0 X           0 0 0
(17) KC Bryan White
Trustee
 3.0 X           0 0 0
Form 990 (2011)
Form 990 (2011)
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 (describe hours for related organizations in Schedule O) 		(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; Officer; Key Employee; Highest compensated employee; Former;
(18) Robert J Beall PhD
President & CEO
 34.0 X   X       477,065 234,488 362,172
(19) ROBERT KAPLAN TRUSTEE
TRUSTEE
 3.0 X           0 0 0
(20) C Richard Mattingly
Exec VP and COO
 50.0     X       475,320 0 284,459
(21) Preston W Campbell MD
Exec VP of Medical Affairs
 34.0     X       310,778 156,360 268,893
(22) Vera H Twigg
Sr. VP and CFO
 50.0     X       325,228 0 119,955
(23) Ann Palmer
Sr. Vice President of Field Ma
 50.0     X       233,610 0 42,419
(24) Daniel Klein
Sr. Vice President - CFFP
 50.0     X       248,172 0 29,128
(25) Gregory August
Chief Information Officer
 50.0         X   218,198 0 44,500
(26) David McLoughlin
Sr. Vice President of Operatio
 50.0         X   267,117 0 49,005
(27) Glen Goldmark
VP of Human Resources
 50.0         X   213,637 0 39,578
(28) Amy DeMaria
Sr VP of Communications
 50.0         X   212,990 0 28,682
(29) Mary Dwight
VP of Government Affairs
 50.0         X   195,488 0 50,744


1b Sub-Total................MediumBullet
c Total from continuation sheets to Part VII, Section A....MediumBullet
d Total (add lines 1b and 1c)............MediumBullet 3,177,603 390,848 1,319,535
2
Total number of individuals (including but not limited to those listed above) who received more than $100,000 of reportable compensation from the organizationMediumBullet67
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
ICS CORPORATION
2225 RICHMOND ST
PHILADELPHIA,PA19125 		MAILSHOP 1,452,328
HUB LABELS
18223 SHAWLEY DRIVE
HAGERSTOWN,MD21740 		PRINTING 936,511
DIAMONDBACK DIRECT
844 RITCHIE HWY
SEVERNA PARK,MD21146 		MAILSHOP 850,497
RMI DIRECT MARKETING
42 OLD RIDGEWAY ROAD
DANBURY,CT06810 		LIST MANAGEMENT 550,440
ITS RESOURCES LLC
7 HARVARD COURT
ROCKVILLE,MD20850 		IT SERVICES 464,713
2
Total number of independent contractors (including but not limited to those listed above) who received more than $100,000 of compensation from the organization MediumBullet46
Form 990 (2011)
Form 990 (2011)
Page 9
Part VIII
Statement of Revenue
(A)
Total revenue 		(B)
Related or
exempt
function
revenue 		(C)
Unrelated
business
revenue 		(D)
Revenue
excluded from
tax under sections
512, 513, or 514
Contributions, Gifts, Grants and Other Similar Amounts 1a Federated campaigns..1a  
b Membership dues....1b  
c Fundraising events....1c  
d Related organizations...1d 81,863,236
e Government grants (contributions)1e  
f All other contributions, gifts, grants, and
similar amounts not included above1f 		19,153,167
g Noncash contributions included in lines 1a-1f:$ 532,764
h Total. Add lines 1a-1f.......MediumBullet 101,016,403
Program Service Revenue Business Code
2a SCIENTIFIC CONFERENCE 611,600 1,648,930 1,648,930    
b PROGRAM MANAGEMENT FEES 541,900 8,920,638 8,920,638    
c CALL CENTER 541,900 1,938,316 1,938,316    
d LICENSE FEES 900,003 13,762,061     13,762,061
e
f All other program service revenue .        
g Total. Add lines 2a–2f........MediumBullet 26,269,945
Other Revenue 3 Investment income (including dividends, interest
and other similar amounts).....MediumBullet 3,438,058     3,438,058
4 Income from investment of tax-exempt bond proceeds..MediumBullet 0      
5 Royalties............MediumBullet 1,450,872     1,450,872
(i) Real (ii) Personal
6a Gross rents    
b Less: rental expenses    
c Rental income or (loss)    
d Net rental income or (loss).......MediumBullet        
(i) Securities (ii) Other
7a Gross amount from sales of assets other than inventory 108,262,549  
b Less: cost or other basis and sales expenses 104,433,908  
c Gain or (loss) 3,828,641  
d Net gain or (loss)..........MediumBullet 3,828,641     3,828,641
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      
Miscellaneous Revenue Business Code
11a LIST RENTAL 533,110 576,265     576,265
b            
c            
d All other revenue ....        
e Total. Add lines 11a–11d ......MediumBullet 576,265
12 Total revenue. See Instructions....MediumBullet 136,580,184 12,507,884   23,055,897
Form 990 (2011)
Form 990 (2011)
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) but are not required to complete columns (B), (C), and (D).
Check if Schedule O contains a response to any question 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 governments and organizations in the United States. See Part IV, line 21 73,053,292 73,053,292
2 Grants and other assistance to individuals in the United States. See Part IV, line 22 1,212,242 1,212,242
3 Grants and other assistance to governments, organizations, and individuals outside the United States. See Part IV, lines 15 and 16 236,031 236,031
4 Benefits paid to or for members 0  
5 Compensation of current officers, directors, trustees, and key employees .... 2,331,798 1,725,408 334,759 271,631
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 20,131,956 14,896,590 2,890,194 2,345,172
8 Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) .... 1,210,677 895,837 173,808 141,032
9 Other employee benefits ....... 2,003,186 1,482,253 287,582 233,351
10 Payroll taxes ........... 1,594,641 1,214,254 191,535 188,852
11 Fees for services (non-employees):        
a Management ...... 0      
b Legal ......... 380,252 324,835 55,417 0
c Accounting ........... 180,167 59,890 120,277 0
d Lobbying ........... 293,211 293,211 0 0
e Professional fundraising. See Part IV, line 17.. 0  
f Investment management fees ...... 102,488 0 102,488 0
g Other .......... 2,965,468 1,999,889 0 965,579
12 Advertising and promotion .... 6,422 3,917 1,028 1,477
13 Office expenses ....... 1,955,394 1,768,900 83,822 102,672
14 Information technology ...... 3,584,763 2,824,293 271,911 488,559
15 Royalties .. 0      
16 Occupancy ........... 1,505,673 1,190,541 198,720 116,412
17 Travel ............ 786,559 694,250 21,990 70,319
18 Payments of travel or entertainment expenses for any federal, state, or local public officials ...... 0      
19 Conferences, conventions, and meetings .... 2,394,030 2,358,973 12,874 22,183
20 Interest ........... 0      
21 Payments to affiliates ....... 0      
22 Depreciation, depletion, and amortization ..... 485,741 426,836 29,705 29,200
23 Insurance .............. 408,836 338,988 24,428 45,420
24 Other expenses. Itemize expenses not covered above (List miscellaneous expenses in line 24f. If line 24f amount exceeds 10% of line 25, column (A) amount, list line 24f expenses on Schedule O.)
a DIRECT MAIL PRINTING 3,585,707 1,056,349 0 2,529,358
b DIRECT MAIL POSTAGE 3,222,034 949,211 0 2,272,823
c TRAINING 366,080 281,331 38,592 46,157
d MAILING LIST RENTAL 574,881 169,360 0 405,521
e
f All other expenses 1,150,085 557,371 548,653 44,061
25 Total functional expenses. Add lines 1 through 24f 125,721,614 110,014,052 5,387,783 10,319,779
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). 9,652,139 2,843,520 0 6,808,617
Form 990 (2011)
Form 990 (2011)
Page 11
Part X Balance Sheet
(A)
Beginning of year 		(B)
End of year
Assets 1 Cash—non-interest-bearing .......... 0 1 0
2 Savings and temporary cash investments ....... 10,129,208 2 29,623,023
3 Pledges and grants receivable, net ......... 23,195,345 3 17,362,252
4 Accounts receivable, net ......... 3,394,223 4 3,775,431
5 Receivables from current and former officers, directors, trustees, key employees, and highest compensated employees. Complete Part II of
Schedule L .......... 0 5 0
6 Receivables from other disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B). Complete Part II of
Schedule L .......... 0 6 0
7 Notes and loans receivable, net ............. 0 7 0
8 Inventories for sale or use .............. 513,317 8 462,935
9 Prepaid expenses and deferred charges ............ 1,074,652 9 1,615,334
10a Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D 10a 8,356,373
b Less: accumulated depreciation. ..... 10b 5,776,309 1,954,050 10c 2,580,064
11 Investments—publicly traded securities .......... 99,508,241 11 117,635,184
12 Investments—other securities. See Part IV, line 11 ...... 37,241,095 12 42,519,485
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 ........... 44,030,803 15 747,656
16 Total assets. Add lines 1 through 15 (must equal line 34)... 221,040,934 16 216,321,364
Liabilities 17 Accounts payable and accrued expenses . 10,639,429 17 12,344,388
18 Grants payable .......... 19,417,980 18 19,846,941
19 Deferred revenue .......... 2,689,816 19 3,567,174
20 Tax-exempt bond liabilities .......... 0 20 0
21 Escrow or custodial account liability. Complete Part IV of Schedule D.. 0 21 0
22 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..... 0 25 5,113,946
26 Total liabilities. Add lines 17 through 25..... 32,747,225 26 40,872,449
Net Assets or Fund Balance Organizations that follow SFAS 117, check here MediumBullet and complete lines 27 through 29, and lines 33 and 34.
27 Unrestricted net assets ..... 165,901,802 27 154,243,452
28 Temporarily restricted net assets ..... 19,046,213 28 17,895,922
29 Permanently restricted net assets ..... 3,345,694 29 3,309,541
Organizations that do not follow SFAS 117, 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 ..... 188,293,709 33 175,448,915
34 Total liabilities and net assets/fund balances ..... 221,040,934 34 216,321,364
Form 990 (2011)
Form 990 (2011)
Page 12
Part XI
Reconcilliation of Net Assets
Check if Schedule O contains a response to any question in this Part XI .........
1
Total revenue (must equal Part VIII, column (A), line 12) ...
1
136,580,184
2
Total expenses (must equal Part IX, column (A), line 25) ....
2
125,721,614
3
Revenue less expenses. Subtract line 2 from line 1 ...
3
10,858,570
4
Net assets or fund balances at beginning of year (must equal Part X, line 33, column (A)) ..
4
188,293,709
5
Other changes in net assets or fund balances (explain in Schedule O) ...
5
-23,703,364
6
Net assets or fund balances at end of year. Combine lines 3, 4, and 5 (must equal Part X, line 33, column (B)) ....
6
175,448,915
Part XII
Financial Statements and Reporting
Check if Schedule O contains a response to any question 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
b
Were the organization’s financial statements audited by an independent accountant?........
2b
Yes
 
c
If “Yes,” to 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? If the organization changed either its oversight process or selection process during the tax year, explain in Schedule O. ...........................
2c
Yes
 
d
If “Yes” to line 2a or 2b, check a box below to indicate whether the financial statements for the year were issued on a separate basis, consolidated basis, or both:
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 (2011)
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 See separate instructions.
OMB No. 1545-0047
2011
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
section 170(b)(1)(A)(iv). (Complete Part II.)
6
7
8
9
receipts from activities related to its exempt functions—subject to certain exceptions, and (2) no more than 331/3% of
its support from gross investment income and unrelated business taxable income (less section 511 tax) from businesses
acquired by the organization after June 30, 1975. See section 509(a)(2). (Complete Part III.)
10
11
e
f
g
(i) a person who directly or indirectly controls, either alone or together with persons described in (ii)
Yes
No
and (iii) below, the governing body of the the supported organization? ................
11g(i)
 
No
(ii) a family member of a person described in (i) above? ......................
11g(ii)
 
No
(iii) a 35% controlled entity of a person described in (i) or (ii) above? ................
11g(iii)
 
No
h
(i)
Name of supported organization 		(ii)
EIN 		(iii)
Type of organization (described on lines 1- 9 above or IRC section (see instructions)) 		(iv)
Is the organization in col. (i) listed in your governing document? 		(v)
Did you notify the organization in col. (i) of your support? 		(vi)
Is the organization in col. (i) organized in the U.S.? 		(vii)
Amount of support?
Yes No Yes No Yes No
Total                  

For Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 11285F
Schedule A (Form 990 or 990-EZ) 2011
Schedule A (Form 990 or 990-EZ) 2011
Page 2
Part II
Support Schedule for Organizations Described in IRC 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) (a) 2007 (b) 2008 (c) 2009 (d) 2010 (e) 2011 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .... 125,762,419 112,573,276 94,548,345 106,799,244 101,016,043 540,699,327
2 Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.......            
3 The value of services or facilities furnished by a governmental unit to the organization without charge..            
4 Total. Add lines 1 through 3.. 125,762,419 112,573,276 94,548,345 106,799,244 101,016,043 540,699,327
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)..            
6 Public Support. Subtract line 5 from line 4.           540,699,327
Section B. Total Support
Calendar year(or fiscal year beginning in) (a) 2007 (b) 2008 (c) 2009 (d) 2010 (e) 2011 (f) Total
7 Amounts from line 4.. 125,762,419 112,573,276 94,548,345 106,799,244 101,016,043 540,699,327
8 Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. 9,254,984 5,292,496 2,946,628 2,848,122 4,888,930 25,231,160
9 Net income from unrelated business activities, whether or not the business is regularly carried on.. 0 1,916 0 0 0 1,916
10 Other income. (Explain in Part IV.) Do not include gain or loss from the sale of capital assets.. 1,086,167 998,418 636,827 467,607 576,265 3,765,284
11 Total support (Add lines 7 through 10).           569,697,687
12
12
85,445,190
13
Section C. Computation of Public Support Percentage
14
14
94.910 %
15
15
94.940 %
16a
b
17a
b
18
Schedule A (Form 990 or 990-EZ) 2011
Schedule A (Form 990 or 990-EZ) 2011
Page 3
Part III
Support Schedule for Organizations Described in IRC 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) (a) 2007 (b) 2008 (c) 2009 (d) 2010 (e) 2011 (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) (a) 2007 (b) 2008 (c) 2009 (d) 2010 (e) 2011 (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 IV.)            
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) 2011
Schedule A (Form 990 or 990-EZ) 2011
Page 4
Part IV
Supplemental Information. Supplemental Information. Complete this part to provide the explanation required by Part II, line 10; Part II, line 17a or 17b; or Part III, line 12. Also complete this part for any additional information. (See instructions).
Facts And Circumstances Test
 
Explanation
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 INVESTIGATIVE RESULTS WITH ONE ANOTHER. FEES FOR ATTENDANCE AT THIS CONFERENCE ARE REPORTED ON LINE 12. PROGRAM MANAGEMENT FEES REPRESENT CHARGES FOR THE MANAGEMENT OF OPERATIONS PROVIDED BY CYSTIC FIBROSIS FOUNDATION PHARMACY, LLC (CFFP) (A DISREGARDED ENTITY OF THE ORGANIZATION) TO CYSTIC FIBROSIS SERVICES, INC. (A SUBSIDIARY OF CFFP). LICENSE FEES ARE PAID BY CYSTIC FIBROSIS SERVICES, INC. TO CFFP, LLC, FOR PROMOTION OF THE CFS PHARMACY, FEATURING ON THE WEBSITE, USE OF PATIENT EDUCATION AND COMMUNICATION MATERIALS, USE OF ORGANIZATION NAME, LOGO AND TRADEMARK, ETC. CFS's SOLE ACTIVITY IS TO OPERATE AND MANAGE A SPECIALTY PHARMACY THAT SELLS CYSTIC FIBROSIS RELATED PRESCRIPTION PHARMACEUTICALS, RELATED DURABLE MEDICAL EQUIPMENT AND NON-PRESCRIPTION CYSTIC FIBROSIS RELATED VITAMINS AND SUPPLEMENTS. CFS SERVES PATIENTS WHO HAVE BEEN DIAGNOSED WITH CYSTIC FIBSOSIS. THIS REVENUE IS NOT TAXABLE BECAUSE THE ORGANIZATION RECEIVED A PRIVATE LETTER RULING DETERMINING THAT CFS'S ACTIVITIES WERE RELATED TO THE ORGANIZATION'S EXEMPT PURPOSE.
 
 
 
Schedule A (Form 990 or 990-EZ) 2011

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.
OMB No. 1545-0047
2011
Name of 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 Part I, line 2, of its Form 990-PF, 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) (2011)

Page 2
Schedule B (Form 990, 990-EZ, or 990-PF) (2011)
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
 

     
RESTRICTED
RESTRICTED  
RESTRICTED, RESTRICTED   RESTRICTED

$RESTRICTED




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

     
 
   

$  




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

     
 
   

$  




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

     
 
   

$  




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

     
 
   

$  




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

     
 
   

$  




(Complete Part II if there is a noncash contribution.)
Schedule B (Form 990, 990-EZ, or 990-PF) (2011)

Page 3
Schedule B (Form 990, 990-EZ, or 990-PF) (2011)
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) (2011)

Page 4
Schedule B (Form 990, 990-EZ, or 990-PF) (2011)
Name of organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
  		Employer identification number

13-1930701
Part III
Exclusively religious, charitable, etc., individual contributions to section 501(c)(7), (8), or (10) organizations
that total more than $1,000 for the year. 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) (2011)

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 Bullet See separate instructions.
OMB No. 1545-0047
2011
Open to Public
Inspection
If the organization answered “Yes” to 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” to 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” to Form 990, Part IV, Line 5 (Proxy Tax) or Form 990-EZ, line 35c (Proxy Tax), 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-.










For Privacy Act and Paperwork Reduction Act Notice, see the instructions for Form 990.
Cat. No. 50084S
Schedule C (Form 990 or 990-EZ) 2011

Schedule C (Form 990 or 990-EZ) 2011
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 expenses, and share of excess lobbying expenditures).
B Check
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) ...... 91,903  
b Total lobbying expenditures to influence a legislative body (direct lobbying) ....... 480,610  
c Total lobbying expenditures (add lines 1a and 1b) ................... 572,513  
d Other exempt purpose expenditures ........................ 125,149,101  
e Total exempt purpose expenditures (add lines 1c and 1d) ............... 125,721,614  
f Lobbying nontaxable amount. Enter the amount from the following table in both
columns.		 1,000,000  
  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) ................. 250,000  
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 instructions for lines 2a through 2f on page 4.)
Lobbying Expenditures During 4-Year Averaging Period
  Calendar year (or fiscal year
beginning in) 		(a) 2008 (b) 2009 (c) 2010 (d) 2011 (e) Total
             
2a Lobbying non-taxable amount 1,000,000 1,000,000 1,000,000 1,000,000 4,000,000
             
b Lobbying ceiling amount
(150% of line 2a, column(e)) 		        6,000,000
             
c Total lobbying expenditures 150,679 165,973 257,023 572,513 1,146,188
             
d Grassroots nontaxable amount 250,000 250,000 250,000 250,000 1,000,000
             
e Grassroots ceiling amount
(150% of line 2d, column (e))		         1,500,000
             
f Grassroots lobbying expenditures 14,000 14,000 11,250 91,903 131,153
Schedule C (Form 990 or 990-EZ) 2011


Schedule C (Form 990 or 990-EZ) 2011
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 to lines 1a through 1i below, provide in Part IV a detailed description of the lobbying activity.
(a)
Yes
No
(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? .........................................
 
 
b
Paid staff or management (include compensation in expenses reported on lines 1c through 1i)? ....
 
 
c
Media advertisements? ....................................
 
 
 
d
Mailings to members, legislators, or the public? .........................
 
 
 
e
Publications, or published or broadcast statements? .......................
 
 
 
f
Grants to other organizations for lobbying purposes? .......................
 
 
 
g
Direct contact with legislators, their staffs, government officials, or a legislative body? ........
 
 
 
h
Rallies, demonstrations, seminars, conventions, speeches, lectures, or any similar means? ......
 
 
 
i
Other activities? ..........................
 
 
 
j
Total. Add lines 1c through 1i ...............................
 
2a
Did the activities in line 1 cause the organization to be not described in section 501(c)(3)? .....
 
 
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
Complete this part to provide the descriptions required for Part l-A, line 1; Part l-B, line 4; Part l-C, Part II-A; line 5; and Part ll-B, line 1.
Also, complete this part for any additional information.
Identifier Return Reference Explanation
Schedule C (Form 990 or 990EZ) 2011

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," to 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. SchDMd Bullet See separate instructions.
OMB No. 1545-0047
2011
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" to Form 990, Part IV, line 6.
(a) Donor advised funds (b) Funds and other accounts
1 Total number at end of year .......    
2 Aggregate contributions to (during year) ...    
3 Aggregate 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" to 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 and enforcing conservation easements during the year SchDMd Bullet  
7
Amount of expenses incurred in monitoring, inspecting, 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 170(h)(4)(B)(ii)? ....................................
9
In Part XIV, 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" to 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 XIV, 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)
Revenues included in 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
Revenues included in Form 990, Part VIII, line 1 ..........................SchDMd Bullet $  
b
Assets included in Form 990, Part X ...............................SchDMd Bullet $  
For Privacy Act and Paperwork Reduction Act Notice, see the Intructions for Form 990
Cat. No. 52283D
Schedule D (Form 990) 2011

Schedule D (Form 990) 2011
Page 2
Part III
Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets (continued)
3
Using the organization’s 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 XIV.
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" to 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 XIV 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? .....................
b
If “Yes,” explain the arrangement in Part XIV.
Part V
Endowment Funds. Complete if the organization answered "Yes" to 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 year end balance (line 1g) held as:
a
Board designated or quasi-endowment SchDMd Bullet  
b
Permanent endowment SchDMd Bullet  
c
Temporarily restricted endowment SchDMd Bullet  
The percentages in 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" to 3a(ii), are the related organizations listed as required on Schedule R? .........
3b
 
 
4
Describe in Part XIV the intended uses of the organization's endowment funds.
Part VI
Land, Buildings, and Equipment. 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 ............   1,529,793 506,968 1,022,825
d Equipment ................   6,826,580 5,269,341 1,557,239
e Other .................        
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).).......SchDMdBullet 2,580,064
Schedule D (Form 990) 2011

Schedule D (Form 990) 2011
Page 3
Part VII
Investments—Other Securities. 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) OTHER INVESTMENT FUNDS 		9,643,597 F

(B) MARKETABLE ALT. INV. FUNDS 		29,566,347 F

(C) INTEREST IN PERPETUAL TRUSTS 		3,309,541 F






Total. (Column (b) must equal Form 990, Part X, col. (B) line 12.)Small Bullet 42,519,485
Part VIII
Investments—Program Related. See Form 990, Part X, line 13.
(a) Description of investment type (b) Book value (c) Method of valuation:
Cost or end-of-year market value








Total. (Column (b) must equal Form 990, Part X, col.(B) line 13.)Small Bullet  
Part IX
Other Assets. See Form 990, Part X, line 15.
(a) Description (b) Book value








Total. (Column (b) must equal Form 990, Part X, col.(B) line 15.)...........Small Bullet  
Part X
Other Liabilities. See Form 990, Part X, line 25.
1.(a) Description of Liability (b) Book value
Federal Income Taxes 0
INTERCOMPANY PAYABLE 5,113,946








Total. (Column (b) must equal Form 990, Part X, col.(B) line 25.)Small Bullet 5,113,946
2. Fin 48 (ASC 740) Footnote. In Part XIV, 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 (ASC740).
Schedule D (Form 990) 2011

Schedule D (Form 990) 2011
Page 4
Part XI Reconciliation of Change in Net Assets from Form 990 to Financial Statements
1 Total revenue (Form 990, Part VIII, column (A), line 12) .................... 1  
2 Total expenses (Form 990, Part IX, column (A), line 25) ..................... 2  
3 Excess or (deficit) for the year. Subtract line 2 from line 1 ............. 3  
4 Net unrealized gains (losses) on investments .......................... 4  
5 Donated services and use of facilities ............................. 5  
6 Investment expenses ................................... 6  
7 Prior period adjustments .................................. 7  
8 Other (Describe in Part XIV.) ................................. 8  
9 Total adjustments (net). Add lines 4 through 8 ......................... 9  
10 Excess or (deficit) for the year per financial statements. Combine lines 3 and 9 ......... 10  
Part XII Reconciliation of Revenue per Audited Financial Statements With Revenue per Return
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 on investments .......... 2a  
b Donated services and use of facilities ......... 2b  
c Recoveries of prior year grants ........... 2c  
d Other (Describe in Part XIV.) ............ 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 XIV.) ........... 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 XIII Reconciliation of Expenses per Audited Financial Statements With Expenses per Return
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 XIV.) ............ 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 XIV.) ............ 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 XIV
Supplemental Information
Complete this part to 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; Part XI, line 8; Part XII, lines 2d and 4b; and Part XIII, lines 2d and 4b. Also complete this part to provide any additional information.
Identifier Return Reference Explanation
Schedule D (Form 990) 2011

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.
OMB No. 1545-0047
2011
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. (Use Part V if additional space is needed.)
(a) Region (b) Number of offices in the region (c) Number of employees or agents in region or independent contractors (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 region/investments
in region
North America 0 0 Grantmaking NONE 192,831
Europe (Including Iceland and Greenland) 0 0 Grantmaking none 43,200
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
3a Sub-total ..... 0 0 236,031
b Total from continuation sheets to Part I ...      
c Totals (add lines 3a and 3b) 0 0 236,031
For Privacy Act and Paperwork Reduction Act Notice, see the Instructions for Form 990.Cat. No. 50082W Schedule F (Form 990) 2011
Schedule F (Form 990) 2011
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. Check this box if no one recipient received more than $5,000 ........ MediumBullet
Use Part V if additional space is needed.
1 (a) Name of organization (b) IRS code section
and EIN (if applicable)		 (c) Region (d) Purpose of
grant 		(e) Amount of
cash grant 		(f) Manner of
cash
disbursement 		(g) Amount of
of non-cash
assistance 		(h) Description
of non-cash
assistance 		(i) Method of
valuation
(book, FMV,
appraisal, other)
North America RESEARCH 96,166 CHECK      
North America PILOT STUDIES 96,665 CHECK      
Europe/Iceland/Greenland PILOT STUDIES 43,200 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
3
3
Enter total number of other organizations or entities ........................MediumBullet
 
Schedule F (Form 990) 2011
Schedule F (Form 990) 2011Page 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.
Use Part V 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) 2011
Schedule F (Form 990) 2011
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 (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 file Form 3520 and/or Form 3520-A. (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, 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 file Form 5713, International Boycott Report (see instructions for Form 5713)................................................
Schedule F (Form 990) 2011
Schedule F (Form 990) 2011
Page 5
Part V
Supplemental Information
Complete this part to 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).
Identifier ReturnReference Explanation
Procedures for monitoring grant funds outside of the U.S. Schedule F, Part I, Line 2 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.
     
     
     
     
     
     
     
     
     
     
     
     
     
     
     
     
     
     
     
     
     
     
Schedule F (Form 990) 2011
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," to Form 990, Part IV, line 21 or 22.
lBullet Attach to Form 990
OMB No. 1545-0047
2011
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 Governments and Organizations in the United States. Complete if the organization answered "Yes" to
Form 990, Part IV, line 21 for any recipient that received more than $5,000. Check this box if no one recipient received more than $5,000. Use
Part IV and Schedule I-1 (Form 990) if additional space is needed ......................... lBullet
(a) Name and address of organization
or government		 (b) EIN (c) IRC Code 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 Hospital4440 West 95th Street
Oak Lawn,IL60453 		36-2169147 501c(3) 44,097       CF CARE CENTER
(2) Agile Sciences Inc840 Main Campus Drive
Lab 3550
Raleigh,NC27606 		20-8755458 CORP 75,000       RESEARCH
(3) Albany Medical CollegeElsmere A-107
Albany,NY12208 		14-1338310 501c(3) 91,870       CF CARE CENTER
(4) Alfred I Dupont Institute of the Nemours Foundati1600 Rockland Road
Wilmington,DE19899 		59-0634433 501c(3) 48,935       CF CARE CENTER
(5) All Children's HospitalDept 9010
PO Box 269
St Petersburg,FL33731 		59-0683252 501c(3) 98,890       CF CARE CENTER
(6) Arizona Board of Regents University of ArizonaSponsored Projects Services
PO Box 31020
Tucson,AZ857223308 		74-2652689 501c(3) 54,685       CF CARE CENTER
(7) Arizona Board of Regents University of ArizonaSponsored Projects Services
888 N Euclid Room 510
Tucson,AZ857223308 		74-2652689 501c(3) 27,000       QUALITY IMPROVEMENT
(8) Arkansas Children's Hospital Research Institute I800 Marshall Street
888 N Euclid Room 510
Little Rock,AR72202 		71-0694931 501c(3) 76,795       CF CARE CENTER
(9) Asthma and Allergy Specialists PA411 Billings Road
Slot 512-17
Charlotte,NC28211 		56-1913043 CORP 33,140       CF CARE CENTER
(10) Atlantic Health System100 Madison Avenue
Suite 104
Morristown,NJ07962 		20-2088165 501c(3) 68,435       CF CARE CENTER
(11) Atlantic Health System100 Madison Avenue
Morristown,NJ07962 		52-1958352 501c(3) 21,600       QUALITY IMPROVEMENT
(12) Baylor College of MedicinePO Box 1
Houston,TX77212 		74-1613878 501c(3) 228,370       CF CARE CENTER
(13) Baystate Medical Center (95-196)759 Chestnut Street
Springfield,MA01199 		04-2790311 501c(3) 30,655       CF CARE CENTER
(14) Beth Israel Medical CenterOffice of Grants Contracts
New York,NY10038 		13-5564934 501c(3) 61,470       CF CARE CENTER
(15) Billings Clinic2800 10th Ave North
160 Water Street 24th Floor
Billings,MT59107 		81-0231784 501c(3) 35,000       CF CARE CENTER
(16) Board of Trustees Southern Illinois UniversityDivision of Pulmonary Medicine
Springfield,IL62794 		37-6005961 501c(3) 6,350       CF CARE CENTER
(17) California Pacific Medical Center Research Institu2200 Webster Street Room 405
PO Box 19636
San Francisco,CA94115 		94-0562680 501c(3) 17,135       CF CARE CENTER
(18) CAMC Health Education and Research InstitutePO Box 765
Charleston,WV25323 		55-0753754 501c(3) 16,335       CF CARE CENTER
(19) Carle FOUNDATION HOSPITALDepartment of Pediatrics
Urbana,IL61801 		37-1119538 501c(3) 10,535       CF CARE CENTER
(20) Case Western Reserve University10900 Euclid Avenue
602 W University Avenue
Cleveland,OH441067015 		34-1018992 501c(3) 349,281       RESEARCH CENTERS
(21) Case Western Reserve University10900 Euclid Avenue
Cleveland,OH441067015 		34-1018992 501c(3) 194,400       RESEARCH
(22) Case Western Reserve University10900 Euclid Avenue
Cleveland,OH441067015 		34-1018992 501c(3) 43,600       RESEARCH STUDIES
(23) Case Western Reserve University10900 Euclid Avenue
Cleveland,OH441067015 		34-1018992 501c(3) 43,200       PILOT STUDIES
(24) Central Florida Pulmonary Group326 North Mills Avenue
Orlando,FL32803 		59-1760017 CORP 38,305       CF CARE CENTER
(25) Children's & Women's Physicians of WestchesterPediatric Pulmonology
Valhalla,NY10595 		13-3956599 LLP 70,345       CF CARE CENTER
(26) Children's & Women's Physicians of WestchesterPediatric Pulmonology
Munger Pavilion Room 106
Valhalla,NY10595 		13-3956599 LLP 27,000       ADULT CARE
(27) Children's Health Care2525 Chicago Avenue SO
Munger Pavilion Room 106
Minneapolis,MN55404 		41-1754276 501c(3) 36,288       QUALITY IMPROVEMENT
(28) Children's Healthcare of Atlanta1001 Johnson Ferry Road North
32-2210
Atlanta,GA30342 		58-2367819 501c(3) 78,095       CF CARE CENTER
(29) Children's Hospital & Research Center at Oakland747 52nd Street
Oakland,CA94609 		94-0382330 501c(3) 33,260       CF CARE CENTER
(30) Children's Hospital Central California9300 Valley Childrens Place
Madera,CA93638 		94-1294954 501c(3) 54,380       CF CARE CENTER
(31) Children's Hospital Colorado13123 East 16th Ave
Aurora,CO80045 		84-0166760 501c(3) 175,855       CF CARE CENTER
(32) Children's Hospital Corporation300 Longwood Ave
Boston,MA021155737 		04-2774441 501c(3) 246,955       CF CARE CENTER
(33) Children's Hospital Corporation300 Longwood Ave
Boston,MA021155737 		04-2774441 501c(3) 100,250       TRAINING
(34) Children's Hospital Corporation300 Longwood Ave
Boston,MA021155737 		04-2774441 501c(3) 43,600       RESEARCH STUDIES
(35) Children's Hospital Corporation300 Longwood Ave
Boston,MA021155737 		04-2774441 501c(3) 21,600       QUALITY IMPROVEMENT
(36) Children's Hospital Medical Center AkronOne Perkins Square
Akron,OH443081062 		34-0714357 501c(3) 108,695       CF CARE CENTER
(37) Children's Hospital Medical Center AkronOne Perkins Square
Akron,OH443081062 		34-0714357 501c(3) 27,000       QUALITY IMPROVEMENT
(38) Children's Hospital Medical Center CincinnatiResearch Accounting
Cincinnati,OH45229 		31-0833936 501c(3) 375,920       RESEARCH CENTERS
(39) Children's Hospital Medical Center CincinnatiResearch Accounting
3333 Burnet Avenue
Cincinnati,OH45229 		31-0833936 501c(3) 106,530       CF CARE CENTER
(40) Children's Hospital Medical Center CincinnatiResearch Accounting
3333 Burnet Avenue
Cincinnati,OH45229 		31-0833936 501c(3) 97,750       TRAINING
(41) Children's Hospital of Michigan3663 Woodward Ave S Ste 200
3333 Burnet Avenue
Detroit,MI48201 		38-1357994 501c(3) 73,040       CF CARE CENTER
(42) Children's Hospital of Orange CountyPO Box 5700
Orange,CA926135700 		95-2321786 501c(3) 43,625       CF CARE CENTER
(43) Children's Hospital of Pittsburgh3705 Fifth Avenue
Pittsburgh,PA15213 		25-0402510 501c(3) 216,050       CF CARE CENTER
(44) Children's Hospital of Pittsburgh3705 Fifth Avenue
Pittsburgh,PA15213 		25-0402510 501c(3) 48,000       TRAINING
(45) Children's Hospital Los AngelesResearch Institute
Los Angeles,CA90027 		95-1690977 501c(3) 68,420       CF CARE CENTER
(46) Children's Lung Specialists3838 Meadows Lane
4650 Sunset Blvd
Las Vegas,NV89107 		88-0271963 501c(3) 76,075       CF CARE CENTER
(47) Children's Medical CenterOne Childrens Plaza
Dayton,OH454041815 		31-0672132 501c(3) 78,210       CF CARE CENTER
(48) Children's Memorial Hospital2300 Childrens Plaza - Box 205
Chicago,IL60614 		36-2170833 501c(3) 120,538       CF CARE CENTER
(49) Children's Memorial Hospital2300 Childrens Plaza - Box 205
Chicago,IL60614 		36-2170833 501c(3) 100,250       TRAINING
(50) Children's Memorial Hospital2300 Childrens Plaza - Box 205
Chicago,IL60614 		36-2170833 501c(3) 96,851       RESEARCH
(51) Children's Memorial Hospital2300 Childrens Plaza - Box 205
Chicago,IL60614 		36-2170833 501c(3) 48,600       QUALITY IMPROVEMENT
(52) Children's Memorial Hospital2300 Childrens Plaza - Box 205
Chicago,IL60614 		36-2170833 501c(3) 43,200       PILOT STUDIES
(53) Children's Mercy Hospital2401 Gillham Road
Kansas City,MO64108 		44-0605376 501c(3) 112,355       CF CARE CENTER
(54) Children's National Medical Center111 Michigan Avenue NW
Washington,DC20010 		52-1640403 501c(3) 75,395       CF CARE CENTER
(55) Children's National Medical Center111 Michigan Avenue NW
Washington,DC20010 		52-1654453 501c(3) 21,600       QUALITY IMPROVEMENT
(56) Children's Respiratory Center58 Bear Drive
Greenville,SC29605 		57-0971539 CORP 25,780       CF CARE CENTER
(57) Children's Specialty Group PLLC601 Childrens Lane
Norfolk,VA23507 		54-1871633 501c(3) 74,770       CF CARE CENTER
(58) Christus Santa Rosa Healthcare333 North Santa Rosa
San Antonio,TX78207 		74-1109665 501c(3) 86,985       CF CARE CENTER
(59) Colorado State University Cashier's OfficeSponsored Programs
Fort Collins,CO805232002 		84-6000545 501c(3) 43,186       PILOT STUDIES
(60) Connecticut Children's Medical Center282 Washington Street
Campus Delivery Box 2002
Hartford,CT06106 		06-0646755 501c(3) 46,670       CF CARE CENTER
(61) Cook Children's Medical Center CF Center801 Seventh Avenue
Ft Worth,TX76104 		75-2051646 501c(3) 117,630       CF CARE CENTER
(62) Daughters of Charity Health Services of Austin4900 Mueller Blvd
Austin,TX78723 		74-1109643 501c(3) 64,470       CF CARE CENTER
(63) Drexel University College of MedicineSt Christophers Hospital for Chil
Philadelphia,PA191291191 		23-2979433 501c(3) 77,870       CF CARE CENTER
(64) Drexel University College of Medicine245 N 15th Street
Philadelphia,PA191291191 		23-2979433 501c(3) 21,600       QUALITY IMPROVEMENT
(65) Duke University Medical CenterOffice of Sponsored Programs
Mailstop 107
Durham,NC27710 		56-0532129 501c(3) 55,235       CF CARE CENTER
(66) East Tennessee Children's Hospital Association I2100 Clinch Avenue 310
Box 104025
Knoxville,TN37916 		62-6002604 501c(3) 68,685       CF CARE CENTER
(67) Eastern Maine Medical Center417 State Street
Bangor,ME04401 		01-0211501 501c(3) 25,375       CF CARE CENTER
(68) Emory University1380 South Oxford Road
Suite 305
Atlanta,GA30322 		58-0566256 501c(3) 202,790       CF CARE CENTER
(69) Emory University1380 South Oxford Road
Atlanta,GA30322 		58-0566256 501c(3) 48,000       TRAINING
(70) Emory University1380 South Oxford Road
Atlanta,GA30322 		58-0566256 501c(3) 14,035       ADULT CARE
(71) Erlanger Health System975 East Third Street
Chattanooga,TN37403 		62-6000101 501c(3) 30,675       CF CARE CENTER
(72) Fletcher Allen Health Care111 Colchester Ave
Burlington,VT05401 		03-0219309 501c(3) 75,725       CF CARE CENTER
(73) Fletcher Allen Health Care111 Colchester Ave
Burlington,VT05401 		03-0219309 501c(3) 21,600       QUALITY IMPROVEMENT
(74) Geisinger Medical CenterPediatric Allergy Immunology Pul
Danville,PA17822 		23-6291113 501c(3) 52,305       CF CARE CENTER
(75) Georgia Health Sciences University1120 15th Street
100 N Academy Drive
Augusta,GA309128300 		58-6002053 501c(3) 83,305       CF CARE CENTER
(76) Good Samaritan Hospital1000 Montauk Highway
New York,NY11795 		11-1888924 501c(3) 5,900       CF CARE CENTER
(77) Gundersen Lutheran Medical Foundation1900 South Avenue
La Crosse,WI54601 		39-1249705 501c(3) 14,445       CF CARE CENTER
(78) Hartford HospitalDepartment of Medicine
Hartford,CT06102 		06-0646668 501c(3) 33,000       CF CARE CENTER
(79) Hartford HospitalDepartment of Medicine
80 Seymour Street
Hartford,CT06102 		06-0646668 501c(3) 27,000       ADULT CARE
(80) Henry M Jackson Foundation for the advancement of1404 Rockville Pike Suite 600
80 Seymour Street
Rockville,MD20852 		52-1317896 501c(3) 96,237       RESEARCH
(81) Henry M Jackson Foundation for the advancement of1404 Rockville Pike Suite 600
Rockville,MD20852 		52-1317896 501c(3) 38,505       CF CARE CENTER
(82) Indiana University (Indianapolis)Indiana University Research and Spo
Indianapolis,IN462025167 		35-6001673 501c(3) 49,445       TRAINING
(83) Iowa Health Foundation1440 Ingersoll Avenue
Des Moines,IA50309 		42-6004813 501c(3) 169,710       CF CARE CENTER
(84) Johns Hopkins University School of Medicine1830 E Monument Street 5th Floor
Baltimore,MD21205 		52-0595110 501c(3) 85,950       RESEARCH
(85) Johns Hopkins University School of Medicine1830 E Monument Street 5th Floor
Baltimore,MD21205 		52-0595110 501c(3) 68,250       TRAINING
(86) Kaiser Foundation Hospitals Center for Health Res3800 North Interstate Avenue
Portland,OR97227 		91-1105628 501c(3) 27,000       ADULT CARE
(87) Kaiser Foundation Hospitals Center for Health Res3800 North Interstate Avenue
Portland,OR97227 		91-1105628 501c(3) 24,500       CF CARE CENTER
(88) Kaiser Foundation Research Institute1800 Harrison Street
OAKLAND,CA94612 		94-1105628 501c(3) 130,725       CF CARE CENTER
(89) Kaleida Health219 Bryant Street
16th floor
Buffalo,NY14209 		16-1533232 501c(3) 85,710       CF CARE CENTER
(90) Landon Pediatric Foundation3291 Loma Vista Road
Ventura,CA93003 		93-1097216 501c(3) 21,985       CF CARE CENTER
(91) Lehigh Valley HospitalPediatric Specialty Center
Building 340 Suite 302
Bethlehem,PA18017 		23-1689692 501c(3) 9,314       CF CARE CENTER
(92) Loma Linda University Medical CenterColeman Pavilion
2545 Schoenersville Road
Loma Linda,CA92350 		33-0672915 501c(3) 49,900       CF CARE CENTER
(93) Long Beach Memorial Medical Center2801 Atlantic Avenue
PO Box 2000
Long Beach,CA90806 		95-6105984 501c(3) 97,490       CF CARE CENTER
(94) Long Island Jewish Medical CenterFinance Department
Westbury,NY11590 		11-2241326 501c(3) 85,780       CF CARE CENTER
(95) Long Island Jewish Medical CenterFinance Department
972 Brushhollow Road
Westbury,NY11590 		11-2241326 501c(3) 27,000       ADULT CARE
(96) Loyola University of Chicago2160 S First Avenue
972 Brushhollow Road
Maywood,IL60153 		36-1408475 501c(3) 31,835       CF CARE CENTER
(97) LSUMC - ShreveportP O Box 33932
Shreveport,LA71130 		72-0702002 501c(3) 73,150       CF CARE CENTER
(98) Lutheran Hospital of Indiana7950 West Jefferson Boulevard
FT Wayne,IN46804 		35-1963748 LTD. PTR. 29,130       CF CARE CENTER
(99) Maine Medical Center22 Bramhall Street
Portland,ME04102 		01-0238552 501c(3) 82,865       CF CARE CENTER
(100) Marshall University Research Corporation401 11th Street Suite 1400
Huntington,WV25701 		55-0683361 501c(3) 97,200       RESEARCH
(101) Marshfield Clinic Research Foundation1000 North Oak Avenue
Marshfield,WI54449 		39-0452970 501c(3) 14,392       CF CARE CENTER
(102) Mary Bridge Children's Foundation311 South L Street
Tacoma,WA98405 		94-3030039 501c(3) 33,440       CF CARE CENTER
(103) Medical University of South CarolinaPO Box 997
Mailstop B1-OC
Charleston,SC29402 		57-6000722 501c(3) 83,755       CF CARE CENTER
(104) Miami Children's HospitalMOB 203
Miami,FL33155 		59-0638499 501c(3) 26,565       CF CARE CENTER
(105) Michigan State University301 Administration Bldg
3200 SW 60th Court
East Lansing,MI488241046 		38-6005984 501c(3) 22,745       CF CARE CENTER
(106) Michigan State UniversityKCMS1000 Oakland Drive
Kalamazoo,MI49001 		38-2015695 501c(3) 24,190       CF CARE CENTER
(107) Mission Healthcare Foundation Inc980 Hendersonville Road
Asheville,NC28803 		56-1881331 501c(3) 17,584       CF CARE CENTER
(108) Monmouth Medical Center Foundation300 Second Avenue
Suite C
Long Branch,NJ07740 		22-2456079 501c(3) 61,185       CF CARE CENTER
(109) Monmouth Medical Center Foundation300 Second Avenue
Long Branch,NJ07740 		22-2456079 501c(3) 27,000       QUALITY IMPROVEMENT
(110) Mount Sinai School of MedicineOne Gustave L Levy Place
New York,NY10029 		13-6171197 501c(3) 11,120       CF CARE CENTER
(111) National Jewish Medical and Research Center1400 Jackson Street
Box 3500
Denver,CO80206 		74-2044647 501c(3) 104,745       CF CARE CENTER
(112) Nemours Children's Clinic Jacksonville807 Nira Street
Jacksonville,FL32207 		59-0634433 501c(3) 148,325       CF CARE CENTER
(113) Nemours Children's Clinic Jacksonville807 Nira Street
Jacksonville,FL32207 		59-0634433 501c(3) 27,000       QUALITY IMPROVEMENT
(114) New York Medical College40 Sunshine Cottage Road
Valhalla,NY10595 		13-1099420 501c(3) 27,000       QUALITY IMPROVEMENT
(115) North Suburban Pulmonary Research and Education8780 W Gold
Niles,IL60714 		36-4393617 501c(3) 8,000       CF CARE CENTER
(116) Northwestern Medical Faculty FoundationFinancial Services
Suite 102
Chicago,IL60611 		36-3097297 501c(3) 8,000       CF CARE CENTER
(117) Northwestern University750 N Lake Shore Drive
680 N Lake Shore Dr Suite 1118
Chicago,IL606113008 		36-2167817 501c(3) 21,659       ADULT CARE
(118) Northwestern University750 N Lake Shore Drive
Rubloff 7th Floor
Chicago,IL606113008 		36-2167817 501c(3) 21,600       QUALITY IMPROVEMENT
(119) Oregon Health & Science UniversitySponsored Projects Administration O
Rubloff 7th Floor
Portland,OR97239 		93-1176109 501c(3) 140,950       CF CARE CENTER
(120) Pediatric SpecialtySaint Barnabas Medical Center
0690 SW Bancroft Street
Livingston,NJ07039 		22-1494440 501c(3) 21,905       CF CARE CENTER
(121) Pennsylvania State UniversityCollege of Medicine
Pediatric Pulmonary Division
Hershey,PA17033 		24-6000376 501c(3) 99,440       CF CARE CENTER
(122) Phoenix Children's Hospital1300 North 12th Street
Office of Research Affairs H138
Phoenix,AZ85006 		86-0422559 501c(3) 83,815       CF CARE CENTER
(123) Providence Alaska Medical Center3200 Providence Drive
Anchorage,AK995196604 		92-0016429 501c(3) 27,995       CF CARE CENTER
(124) Providence Physician Service101 W 8th Ave
PO Box 196604
Spokane,WA99204 		91-1216033 CORP 57,380       CF CARE CENTER
(125) Regents of the University of ColoradoGrants Contracts
Aurora,CO800450508 		84-6000555 501c(3) 166,376       TRAINING
(126) Regents of the University of ColoradoGrants Contracts
F428 Fitzsimons Building 500
Aurora,CO800450508 		84-6000555 501c(3) 75,000       RESEARCH
(127) Regents of the University of ColoradoGrants Contracts
F428 Fitzsimons Building 500
Aurora,CO800450508 		84-6000555 501c(3) 21,600       QUALITY IMPROVEMENT
(128) Rhode Island Hospital593 Eddy Street
F428 Fitzsimons Building 500
Providence,RI02903 		05-0258954 501c(3) 54,935       CF CARE CENTER
(129) Rosalind Franklin University of Medicine and Scien3333 Green Bay Road
North Chicago,IL60064 		36-2181973 501c(3) 179,886       RESEARCH
(130) Rush University Medical Center1725 West Harrison Suite 718
Chicago,IL60612 		36-2174823 501c(3) 40,130       CF CARE CENTER
(131) Saint Francis Medical Center530 NE Glen Oak Avenue
Peoria,IL61637 		37-0662569 501c(3) 47,355       CF CARE CENTER
(132) Saint Joseph's Hospital and Medical Center703 Main Street
Paterson,NJ07503 		22-1487602 501c(3) 16,145       CF CARE CENTER
(133) Samaritan Medical CenterChild Adolescent Health Services
Watertown,NY13601 		15-0533577 501c(3) 9,210       CF CARE CENTER
(134) Sanford Children's Specialty Clinic1305 W 18th Street
513 Washington Street
Sioux Falls,SD571175039 		46-0447693 501c(3) 54,745       CF CARE CENTER
(135) Seattle Children's Hospital4800 Sand Point Way NE MS T-0111
Seattle,WA98105 		91-0564748 501c(3) 43,200       PILOT STUDIES
(136) Seattle Children's Hospital4800 Sand Point Way NE MS T-0111
Seattle,WA98105 		91-0564748 501c(3) 9,288       QUALITY IMPROVEMENT
(137) Seattle Children's Hospital Foundation6901 Sand Point Way NE
Seattle,WA981050371 		91-0564748 501c(3) 93,510       CF CARE CENTER
(138) South Broward Hospital DistrictJoe DiMaggios Childrens Hospital
Hollywood,FL33321 		59-6014973 501c(3) 47,580       CF CARE CENTER
(139) Spectrum HealthDowntown Campus
Cystic Fibrosis Clinic
Grand Rapids,MI49503 		38-2752328 501c(3) 114,775       CF CARE CENTER
(140) Spectrum HealthDowntown Campus
100 Michigan Street NE MC 004
Grand Rapids,MI49503 		38-2752328 501c(3) 21,600       QUALITY IMPROVEMENT
(141) St Alexius Medical CenterPO Box 1658
100 Michigan Street NE MC 004
Bismarck,ND58502 		45-0226711 501c(3) 26,925       CF CARE CENTER
(142) St Joseph's Regional Medical Center Inc720 East Cedar Street
South Bend,IN46617 		35-1568821 501c(3) 19,110       CF CARE CENTER
(143) St Louis University3500 Lindell Blvd
Suite 440
St Louis,MO63103 		43-0654872 501c(3) 83,130       CF CARE CENTER
(144) St Louis University3500 Lindell Blvd
St Louis,MO63103 		43-0654872 501c(3) 27,000       QUALITY IMPROVEMENT
(145) St Luke's Regional Medical Center100 East Idaho
Boise,ID83712 		82-0161600 501c(3) 41,015       CF CARE CENTER
(146) Stanford University651 Serra Street Suite 220
Suite 200
Stanford,CA943056215 		94-1156365 501c(3) 194,400       RESEARCH
(147) Stanford University651 Serra Street Suite 220
Mail Code 5402
Stanford,CA943056215 		94-1156365 501c(3) 145,415       CF CARE CENTER
(148) Stanford University651 Serra Street Suite 220
Mail Code 5402
Stanford,CA943056215 		94-1156365 501c(3) 42,500       RESEARCH STUDIES
(149) Sutter Medical Center Sacramento5609 J Street Suite C
Mail Code 5402
Sacramento,CA95819 		94-1156621 501c(3) 48,140       CF CARE CENTER
(150) Tenet St Mary's Inc Cystic Fibrosis CenterPO Box 24620
West Palm Beach,FL33407 		75-2932830 CORP 37,190       CF CARE CENTER
(151) The Children's Hospital at Scott & White2401 South 31st Street
901 45th Street
Temple,TX76508 		74-1166904 501c(3) 15,000       CF CARE CENTER
(152) The Children's Hospital of Philadelphia3516 Civic Center Blvd
Philadelphia,PA191044318 		23-1352166 501c(3) 113,022       CF CARE CENTER
(153) The Curators of the University of MissouriOffice of Sponsored Program Adminis
Columbia,MO65211 		43-6003859 501c(3) 172,200       RESEARCH
(154) The Curators of the University of MissouriOffice of Sponsored Program Adminis
310 Jesse Hall
Columbia,MO65211 		43-6003859 501c(3) 63,710       CF CARE CENTER
(155) The Curators of the University of MissouriOffice of Sponsored Program Adminis
310 Jesse Hall
Columbia,MO65211 		43-6003859 501c(3) 45,800       RESEARCH STUDIES
(156) The General Hospital Corporation (aka MassachusMass General Research Finance
310 Jesse Hall
Boston,MA02114 		04-2697983 501c(3) 125,000       RESEARCH
(157) The General Hospital Corporation (aka MassachusMass General Research Finance
PO Box 414876
Boston,MA02114 		04-2697983 501c(3) 97,213       TRAINING
(158) The General Hospital Corporation (aka MassachusMass General Research Finance
PO Box 414876
Boston,MA02114 		04-2697983 501c(3) 96,700       CF CARE CENTER
(159) The Hitchcock FoundationOne Medical Center Drive
PO Box 414876
Lebanon,NH03756 		02-0222139 501c(3) 92,320       CF CARE CENTER
(160) The Johns Hopkins University600 N Wolfe Street Park 316
Baltimore,MD21205 		52-0595110 501c(3) 217,640       CF CARE CENTER
(161) The Johns Hopkins University600 N Wolfe Street Park 316
Baltimore,MD21205 		52-0595110 501c(3) 87,867       RESEARCH CENTERS
(162) The Johns Hopkins University600 N Wolfe Street Park 316
Baltimore,MD21205 		52-0595110 501c(3) 9,288       QUALITY IMPROVEMENT
(163) The Medical College of Wisconsin8701 Watertown Plk Rd
Milwaukee,WI53226 		39-0806261 501c(3) 124,545       CF CARE CENTER
(164) The Medical College of Wisconsin8701 Watertown Plk Rd
Milwaukee,WI53226 		39-0806261 501c(3) 27,000       QUALITY IMPROVEMENT
(165) The Ohio State University Research Foundation1960 Kenny Road
Columbus,OH432101063 		31-6401599 501c(3) 97,200       RESEARCH
(166) The Ohio State University Research Foundation1960 Kenny Road
Columbus,OH432101063 		31-6401599 501c(3) 42,201       RESEARCH STUDIES
(167) The Rector and Visitors of the University of VirgiPO Box 400195
Charlottesville,VA22904 		54-6001796 501c(3) 193,276       RESEARCH
(168) The Rector and Visitors of the University of VirgiPO Box 400195
Charlottesville,VA22904 		54-6001796 501c(3) 104,285       CF CARE CENTER
(169) The Rector and Visitors of the University of VirgiPO Box 400195
Charlottesville,VA22904 		54-6001796 501c(3) 43,600       RESEARCH STUDIES
(170) The Rector and Visitors of the University of VirgiPO Box 400195
Charlottesville,VA22904 		54-6001796 501c(3) 27,000       ADULT CARE
(171) The Rector and Visitors of the University of VirgiPO Box 400195
Charlottesville,VA22904 		54-6001796 501c(3) 21,196       QUALITY IMPROVEMENT
(172) The Regents of the University of California DavisCashiers Office 1200 Dutton Hall
Davis,CA95616 		95-6036494 501c(3) 69,255       CF CARE CENTER
(173) The Regents of the University of California Los AUCLA Office of Contract and Grant A
One Shields Avenue
Los Angeles,CA900241406 		95-6006143 501c(3) 43,200       PILOT STUDIES
(174) The Regents of the University of California San DOffice of Post Award Financial Serv
10920 Wilshire Blvd Suite 200
La Jolla,CA920930954 		95-6006144 501c(3) 107,176       CF CARE CENTER
(175) The Regents of the University of California San DOffice of Post Award Financial Serv
9500 Gilman Drive Dept 0934
La Jolla,CA920930954 		95-6006144 501c(3) 43,200       PILOT STUDIES
(176) The Regents of the University of California San DOffice of Post Award Financial Serv
9500 Gilman Drive Dept 0934
La Jolla,CA920930954 		95-6006144 501c(3) 27,000       ADULT CARE
(177) The Regents of the University of California San FUCSF Office of Sponsored Research
9500 Gilman Drive Dept 0934
San Francisco,CA941430962 		94-6036493 501c(3) 460,000       RESEARCH CENTERS
(178) The Regents of the University of California San FUCSF Office of Sponsored Research
3333 California Street Suite 315
San Francisco,CA941430962 		94-6036493 501c(3) 79,895       CF CARE CENTER
(179) The Regents of the University of California San FUCSF Office of Sponsored Research
3333 California Street Suite 315
San Francisco,CA941430962 		94-6036493 501c(3) 52,250       TRAINING
(180) The Regents of the University of California San FUCSF Office of Sponsored Research
3333 California Street Suite 315
San Francisco,CA941430962 		94-6036493 501c(3) 27,000       ADULT CARE
(181) The Regents of the University of Michigan3003 South State Street Room 3089
3333 California Street Suite 315
Ann Arbor,MI481091274 		38-6006309 501c(3) 206,670       CF CARE CENTER
(182) The Regents of the University of Michigan3003 South State Street Room 3089
Ann Arbor,MI481091274 		38-6006309 501c(3) 43,200       QUALITY IMPROVEMENT
(183) The Regents of the University of MinnesotaSponsored Projects Administration
Minneapolis,MN554552070 		41-6007513 501c(3) 321,220       CF CARE CENTER
(184) The Research Institute at Nationwide Children's HHuntington National Bank
200 Oak St SE
Columbus,OH43260 		31-6056230 501c(3) 200,120       CF CARE CENTER
(185) The Research Foundation of SUNYP O Box 9
Dept 4656 / Ref 413407
Albany,NY122010009 		14-1368361 501c(3) 120,926       CF CARE CENTER
(186) The Research Foundation of SUNY on behalf of Unive211 UB Commons
Amherst,NY14228 		14-1368361 501c(3) 27,000       ADULT CARE
(187) The Research Foundation of SUNY on behalf of Unive211 UB Commons
520 Lee Entrance
Amherst,NY14228 		14-1368361 501c(3) 8,000       CF CARE CENTER
(188) The Research Institute at Nationwide Children's HoHuntington National Bank
520 Lee Entrance
Columbus,OH43260 		31-6056230 501c(3) 27,000       ADULT CARE
(189) The Tampa General Hospital FoundationPO Box 1289
Dept 4656 / Ref 413407
Tampa,FL33601 		27-7354477 501c(3) 53,430       CF CARE CENTER
(190) The Trustees of Columbia University in the City of351 Engineering Terrace
New York,NY10027 		13-5598093 501c(3) 123,590       CF CARE CENTER
(191) The Trustees of Columbia University in the City of351 Engineering Terrace
New York,NY10027 		13-5598093 501c(3) 48,000       TRAINING
(192) The University of Alabama at BirminghamAB 990
Birmingham,AL352940109 		63-6005396 501c(3) 500,000       RESEARCH CENTERS
(193) The University of Alabama at BirminghamAB 990
1530 3rd Avenue S
Birmingham,AL352940109 		63-6005396 501c(3) 142,639       CF CARE CENTER
(194) The University of Chicago5801 S Ellis Avenue
1530 3rd Avenue S
Chicago,IL60637 		36-2177139 501c(3) 53,825       CF CARE CENTER
(195) The University of North Carolina at Chapel HillNorth Carolina State Treasurer
Chapel Hill,NC275991350 		56-6001393 501c(3) 460,000       RESEARCH CENTERS
(196) The University of North Carolina at Chapel HillNorth Carolina State Treasurer
Office of Sponsored Research
Chapel Hill,NC275991350 		56-6001393 501c(3) 253,276       CF CARE CENTER
(197) The University of North Carolina at Chapel HillNorth Carolina State Treasurer
Office of Sponsored Research
Chapel Hill,NC275991350 		56-6001393 501c(3) 444,400       RESEARCH
(198) The University of North Carolina at Chapel HillNorth Carolina State Treasurer
Office of Sponsored Research
Chapel Hill,NC275991350 		56-6001393 501c(3) 86,400       PILOT STUDIES
(199) The University of North Carolina at Chapel HillNorth Carolina State Treasurer
Office of Sponsored Research
Chapel Hill,NC275991350 		56-6001393 501c(3) 73,400       TRAINING
(200) The University of North Carolina at Chapel HillNorth Carolina State Treasurer
Office of Sponsored Research
Chapel Hill,NC275991350 		56-6001393 501c(3) 43,738       RESEARCH STUDIES
(201) The University of Texas at AustinP O Box 7726
Office of Sponsored Research
Austin,TX787137726 		74-6000203 501c(3) 92,867       RESEARCH
(202) The University of Texas at AustinP O Box 7726
Austin,TX787137726 		74-6000203 501c(3) 7,423       RESEARCH STUDIES
(203) The University of Vermont and State Agricultural C85 So Prospect Street
Burlington,VT054050160 		03-0179440 501c(3) 27,000       ADULT CARE
(204) Toledo Children's Hospital2142 N Cove Blvd
Toledo,OH43606 		34-4428256 501c(3) 82,770       CF CARE CENTER
(205) Trustees of Boston University881 Commonwealth Avenue
Boston,MA02215 		04-2103547 501c(3) 43,200       PILOT STUDIES
(206) Trustees of Dartmouth College11 Rope Ferry Road 6210
Hanover,NH037551404 		02-0222111 501c(3) 346,667       RESEARCH CENTERS
(207) Trustees of Dartmouth College11 Rope Ferry Road 6210
Hanover,NH037551404 		02-0222111 501c(3) 233,833       QUALITY IMPROVEMENT
(208) Trustees of Dartmouth College11 Rope Ferry Road 6210
Hanover,NH037551404 		02-0222111 501c(3) 159,528       PATIENT REGISTRY
(209) Trustees of Dartmouth College11 Rope Ferry Road 6210
Hanover,NH037551404 		02-0222111 501c(3) 41,872       PILOT STUDIES
(210) Trustees of Dartmouth College11 Rope Ferry Road 6210
Hanover,NH037551404 		02-0222111 501c(3) 27,000       ADULT CARE
(211) Trustees of Indiana UniversityFinancial Management Services
Bloomington,IN462666057 		35-6001673 501c(3) 186,435       CF CARE CENTER
(212) Trustees of Indiana UniversityFinancial Management Services
PO Box 66057
Bloomington,IN462666057 		35-6001673 501c(3) 18,810       QUALITY IMPROVEMENT
(213) Trustees of the University of Pennsylvania133 South 36th Street Mezzanine
PO Box 66057
Philadelphia,PA191043246 		23-1352685 501c(3) 97,200       RESEARCH
(214) Trustees of the University of Pennsylvania133 South 36th Street Mezzanine
Philadelphia,PA191043246 		23-1352685 501c(3) 75,048       RESEARCH CENTERS
(215) Trustees of the University of Pennsylvania133 South 36th Street Mezzanine
Philadelphia,PA191043246 		23-1352685 501c(3) 27,000       ADULT CARE
(216) Trustees of the University of Pennsylvania133 South 36th Street Mezzanine
Philadelphia,PA191043246 		23-1352685 501c(3) 21,600       QUALITY IMPROVEMENT
(217) Trustees of the University of Pennsylvania on beha3451 Walnut Street
Philadelphia,PA19104 		23-1352685 501c(3) 68,670       CF CARE CENTER
(218) Tulane University Medical School6401 Freret St
Franklin Bldg P-221
New Orleans,LA70118 		72-0423889 501c(3) 88,315       CF CARE CENTER
(219) Tulane University Medical School6401 Freret St
New Orleans,LA70118 		72-0423889 501c(3) 27,000       ADULT CARE
(220) Tulane University Medical School6401 Freret St
New Orleans,LA70118 		72-0423889 501c(3) 15,917       QUALITY IMPROVEMENT
(221) UMDNJ- Robert Wood Johnson Medical SchoolUMDNJ
New Brunswick,NJ08903 		22-1775306 501c(3) 66,905       CF CARE CENTER
(222) University Hospitals of Cleveland2074 Abingdon Road
1 Robert Wood Johnson Place
Cleveland,OH44106 		34-0714775 501c(3) 149,820       CF CARE CENTER
(223) University Hospitals of Cleveland2074 Abingdon Road
Cleveland,OH44106 		34-0714775 501c(3) 26,966       QUALITY IMPROVEMENT
(224) University of Arkansas for Medical Sciences4301 West Markham Street
Little Rock,AR72205 		71-6046242 501c(3) 45,000       CF CARE CENTER
(225) University of Cincinnati560 University Hall
Mail Slot 555
Cincinnati,OH45221 		31-6000989 501c(3) 59,000       TRAINING
(226) University of Cincinnati Physicians Company231 Albert Sabin Way
Sponsored Programs Accounting Dept
Cincinnati,OH452670564 		31-1405915 501c(3) 51,440       CF CARE CENTER
(227) University of FloridaPO Box 115500
MSB 60048
Gainsville,FL32611 		59-6002052 501c(3) 88,440       CF CARE CENTER
(228) University of FloridaPO Box 115500
Gainesville,FL32611 		59-6002052 501c(3) 27,000       ADULT CARE
(229) University of IowaOffice of Vice President for Resear
Iowa City,IA52242 		42-6004813 501c(3) 500,000       RESEARCH CENTERS
(230) University of IowaOffice of Vice President for Resear
Division of Sponsored Programs
Iowa City,IA52242 		42-6004813 501c(3) 67,677       TRAINING
(231) University of IowaOffice of Vice President for Resear
Division of Sponsored Programs
Iowa City,IA52242 		42-6004813 501c(3) 45,500       RESEARCH
(232) University of Kansas Medical Center Research Insti3901 Rainbow Boulevard
Division of Sponsored Programs
Kansas City,KS661607702 		48-1108830 501c(3) 52,030       CF CARE CENTER
(233) University of Kentucky Research FoundationKentucky CF Clinic J424
Lexington,KY405360284 		61-6033693 501c(3) 105,550       CF CARE CENTER
(234) University of Louisville Research Foundation IncOffice of Grants Management
740 South Limestone
Louisville,KY40292 		61-1029626 501c(3) 88,180       CF CARE CENTER
(235) University of Louisville Research Foundation IncOffice of Grants Management
Jouett Hall Belknap Campus
Louisville,KY40292 		61-1029626 501c(3) 21,600       QUALITY IMPROVEMENT
(236) University of Massachusetts Medical Center55 Lake Avenue
Jouett Hall Belknap Campus
Worcester,MA10655 		04-3167352 501c(3) 64,296       CF CARE CENTER
(237) University of MiamiPediatric/Pulmonary Division
Miami,FL33137 		59-0624458 501c(3) 57,655       CF CARE CENTER
(238) University of MiamiPediatric/Pulmonary Division
1601 NW 12th Avenue
Miami,FL33137 		59-0624458 501c(3) 26,855       QUALITY IMPROVEMENT
(239) University of Mississippi Medical Center2500 North State Street
1601 NW 12th Avenue
Jackson,MS392164505 		64-6008520 501c(3) 64,759       CF CARE CENTER
(240) University of Mississippi Medical Center2500 North State Street
Jackson,MS392164505 		64-6008520 501c(3) 27,000       ADULT CARE
(241) University of Nebraska Medical CenterService Building
Omaha,NE681987835 		47-0049123 501c(3) 133,610       CF CARE CENTER
(242) University of Nebraska Medical CenterService Building
985100 Nebraska Medical Center
Omaha,NE681987835 		47-0049123 501c(3) 27,000       QUALITY IMPROVEMENT
(243) University of New Mexico Health Sciences CenterControllers Office
985100 Nebraska Medical Center
Albuquerque,NM871315041 		85-6000642 501c(3) 67,000       CF CARE CENTER
(244) University of New Mexico Health Sciences CenterControllers Office
Health Sciences and Services Bldg
Albuquerque,NM871315041 		85-6000642 501c(3) 21,600       QUALITY IMPROVEMENT
(245) University of Oklahoma Health Sciences CenterPO Box 26901
Health Sciences and Services Bldg
Oklahoma City,OK73190 		73-6017987 501c(3) 113,615       CF CARE CENTER
(246) University of Pittsburgh350 Thackeray Hall
Pittsburgh,PA15260 		25-0965591 501c(3) 460,000       RESEARCH CENTERS
(247) University of Pittsburgh350 Thackeray Hall
Pittsburgh,PA15260 		25-0965591 501c(3) 176,600       RESEARCH STUDIES
(248) University of Rochester1325 Mt Hope Avenue
Rochester,NY14642 		16-0743209 501c(3) 80,790       CF CARE CENTER
(249) University of Rochester1325 Mt Hope Avenue
Suite 260
Rochester,NY14642 		16-0743209 501c(3) 21,600       QUALITY IMPROVEMENT
(250) University of South AlabamaAdmin Bldg 362
Suite 260
Mobile,AL36688 		63-0477348 501c(3) 19,280       CF CARE CENTER
(251) University of South Carolina Research Foundation901 Sumter Street
Columbia,SC29208 		57-0967350 501c(3) 35,080       CF CARE CENTER
(252) University of South FloridaDepartment of Pediatrics
Suite 501
Tampa,FL33606 		59-3102112 501c(3) 27,025       CF CARE CENTER
(253) University of Southern CaliforniaUSC Contracts and Grants
17 Davis Boulevard Suite 200
Los Angeles,CA900339002 		95-1642394 501c(3) 83,455       CF CARE CENTER
(254) University of Southern CaliforniaUSC Contracts and Grants
1540 Alcazar Street
Los Angeles,CA900339002 		95-1642394 501c(3) 27,000       ADULT CARE
(255) University of Tennessee62 S Dunlap
1540 Alcazar Street
Memphis,TN38163 		62-6001636 501c(3) 65,070       CF CARE CENTER
(256) University of Tennessee Medical Center1940 Alcoa Hwy
Knoxville,TN37920 		31-1626179 501c(3) 18,500       CF CARE CENTER
(257) University of Texas Health Center at Tyler11937 US Hwy 271
Suite E-110
Tyler,TX75708 		75-6001354 501c(3) 30,000       CF CARE CENTER
(258) University of Texas Health Center at Tyler11937 US Hwy 271
Tyler,TX75708 		75-6001354 501c(3) 21,600       QUALITY IMPROVEMENT
(259) University of Utah406 Park Bldg
Salt Lake City,UT84112 		87-6000525 501c(3) 190,685       CF CARE CENTER
(260) University of Utah406 Park Bldg
Salt Lake City,UT84112 		87-6000525 501c(3) 35,965       PILOT STUDIES
(261) University of WashingtonGrant Contract Accounting
Seattle,WA981056692 		91-6001537 501c(3) 500,000       RESEARCH CENTERS
(262) University of WashingtonGrant Contract Accounting
3917 University Way NE
Seattle,WA981056692 		91-6001537 501c(3) 194,400       RESEARCH
(263) University of WashingtonGrant Contract Accounting
3917 University Way NE
Seattle,WA981056692 		91-6001537 501c(3) 76,340       CF CARE CENTER
(264) University of WashingtonGrant Contract Accounting
3917 University Way NE
Seattle,WA981056692 		91-6001537 501c(3) 43,200       PILOT STUDIES
(265) University of WashingtonGrant Contract Accounting
3917 University Way NE
Seattle,WA981056692 		91-6001537 501c(3) 41,060       RESEARCH STUDIES
(266) University of Wisconsin Board of Regents750 University Avenue
3917 University Way NE
Madison,WI53706 		39-6006492 501c(3) 142,328       CF CARE CENTER
(267) University of Wisconsin Board of Regents750 University Avenue
Madison,WI53706 		39-6006492 501c(3) 50,171       QUALITY IMPROVEMENT
(268) University of Wisconsin Board of Regents750 University Avenue
Madison,WI53706 		39-6006492 501c(3) 49,750       TRAINING
(269) UT Southwestern Medical Center at Dallas5323 Harry Hines Blvd
Dallas,TX753909040 		75-6002868 501c(3) 165,813       CF CARE CENTER
(270) UT Southwestern Medical Center at Dallas5323 Harry Hines Blvd
Dallas,TX753909040 		75-6002868 501c(3) 43,200       PILOT STUDIES
(271) Vanderbilt University Medical CenterPO Box 30195
Nashville,TN372410195 		62-0476822 501c(3) 162,235       CF CARE CENTER
(272) Vanderbilt University Medical CenterPO Box 30195
Nashville,TN372410195 		62-0476822 501c(3) 9,288       QUALITY IMPROVEMENT
(273) Via Christi Regional Medical Center CF Clinic3311 East Murdock Street
Wichita,KS67218 		48-1172106 501c(3) 56,895       CF CARE CENTER
(274) Virginia Commonwealth UniversityBox 2506 - VCU Station
Richmond,VA232842506 		54-6001758 501c(3) 61,685       CF CARE CENTER
(275) Wake Forest University Health SciencesMedical Center Blvd
WinstonSalem,NC271571064 		22-3849199 501c(3) 55,150       CF CARE CENTER
(276) Washington UniversityCampus Box 1034
St Louis,MO631121408 		43-0653611 501c(3) 209,385       CF CARE CENTER
(277) Washington UniversityCampus Box 1034
700 Rosedale Avenue
St Louis,MO631121408 		43-0653611 501c(3) 21,600       QUALITY IMPROVEMENT
(278) Wayne State UniversityGrants Contracts Office III
700 Rosedale Avenue
Detroit,MI48201 		38-6028425 501c(3) 48,040       CF CARE CENTER
(279) Weill Medical College of Cornell UniversityWhitney Pavilion Rm W-706
Research and Sponsored Programs
New York,NY10021 		15-0532082 501c(3) 45,800       RESEARCH STUDIES
(280) West Virginia University Research CorporationWest Virginia University
1300 York Avenue Box 62
Morgantown,WV265066001 		55-0665758 501c(3) 63,551       CF CARE CENTER
(281) West Virginia University Research CorporationWest Virginia University
PO Box 6001
Morgantown,WV265066001 		55-0665758 501c(3) 27,000       ADULT CARE
(282) Yale UniversityCashier Office of the Asst Treasu
PO Box 6001
New Haven,CT065208231 		06-0646973 501c(3) 64,350       CF CARE CENTER
(283) CYSTIC FIBROSIS FOUNDATION THERAPUETICS6931 ARLINGTON ROAD SUITE 200
BETHESDA,MD20814 		91-2059167 501C(3) 49,932,523       GENERAL SUPPORT
2
Enter total number of section 501(c)(3) and government organizations listed in the line 1 table ................. Bullet Image
171
3
Enter total number of other organizations listed in the line 1 table ......................... . Bullet Image
8
For Privacy Act and Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50055P
Schedule I (Form 990) 2011

Schedule I (Form 990) 2011
Page 2
Part III
Grants and Other Assistance to Individuals in the United States. Complete if the organization answered "Yes" to Form 990, Part IV, line 22.
Use Schedule I-1 (Form 990) 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 646 1,205,234      
(2) FELLOWSHIPS 4 7,008      











Part IV
Supplemental Information. Complete this part to provide the information required in Part I, line 2, and any other additional information.
Identifier 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 US. 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 INSTITUTIONS.
Schedule I (Form 990) 2011


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" to Form 990,
Part IV, question 23.
SchJMediumBullet Attach to Form 990. SchJMediumBullet See separate instructions.
OMB No. 1545-0047
2011
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 in 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 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
officers, directors, trustees, and the CEO/Executive Director, regarding the items checked in line 1a? ....
2
 
 
3
Indicate which, if any, of the following the organization uses 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 in 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
 
No
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) and 501(c)(4) organizations only must complete lines 5-9.
5
For persons listed in 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," to line 5a or 5b, describe in Part III.
6
For persons listed in 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," to line 6a or 6b, describe in Part III.
7
For persons listed in 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
 
No
8
Were any amounts reported in 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" to line 8, did the organization also follow the rebuttable presumption procedure described in Regulations section 53.4958-6(c)? .........................
9
 
 
For Privacy Act and Paperwork Reduction Act Notice, see the Intructions for Form 990
Cat. No. 50053T
Schedule J (Form 990) 2011

Schedule J (Form 990) 2011
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 in 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 column (E) for that individual.
(A) Name (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
reported as deferred
in prior Form 990
(i) Base compensation (ii) Bonus & incentive compensation (iii) Other reportable compensation
(1) Robert J Beall PhD (i)
(ii)		 333,873
168,556 		117,753
57,997 		25,439
7,935 		238,007
104,851 		19,314
0 		734,386
339,339 		0
0
(2) C Richard Mattingly (i)
(ii)		 358,018
0 		95,553
0 		21,749
0 		267,345
0 		17,114
0 		759,779
0 		0
0
(3) Preston W Campbell MD (i)
(ii)		 229,481
118,606 		65,596
32,309 		15,701
5,445 		170,443
71,573 		26,877
0 		508,098
227,933 		0
0
(4) Vera H Twigg (i)
(ii)		 244,233
0 		62,993
0 		18,002
0 		93,694
0 		26,261
0 		445,183
0 		0
0
(5) Ann Palmer (i)
(ii)		 201,870
0 		29,864
0 		1,876
0 		24,116
0 		18,303
0 		276,029
0 		0
0
(6) Daniel Klein (i)
(ii)		 221,229
0 		24,863
0 		2,080
0 		25,128
0 		4,000
0 		277,300
0 		0
0
(7) Gregory August (i)
(ii)		 184,906
0 		32,893
0 		399
0 		22,623
0 		21,877
0 		262,698
0 		0
0
(8) David McLoughlin (i)
(ii)		 232,199
0 		34,112
0 		806
0 		25,128
0 		23,877
0 		316,122
0 		0
0
(9) Glen Goldmark (i)
(ii)		 183,193
0 		28,794
0 		1,650
0 		21,964
0 		17,614
0 		253,215
0 		0
0
(10) Amy DeMaria (i)
(ii)		 180,744
0 		31,869
0 		377
0 		21,390
0 		7,292
0 		241,672
0 		0
0
(11) Mary Dwight (i)
(ii)		 161,126
0 		34,037
0 		325
0 		20,867
0 		29,877
0 		246,232
0 		0
0





Schedule J (Form 990) 2011

Schedule J (Form 990) 2011
Page 3
Part III
Supplemental Information
Complete this part to provide the information, explanation, or descriptions required for Part I, lines 1a, 1b, 3, 4c, 5a, 5b, 6a, 6b, 7, and 8. Also complete this part for any additional information.
Identifier Return Reference Explanation
SUPPLEMENTAL NONQUALIFIED RETIREMENT PLAN PART I, LINE 4B 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 DESIGNATED VESTING DATE. FURTHER INFORMATION ABOUT THE NONQUALIFIED DEFERRED COMPENSATION PLAN IN WHICH THOSE PERSONS PARTICIPATE IS PROVIDED IN THE ADDITIONAL INFORMATION FOR SCHEDULE J, PART II, BELOW.
COMPENSATION PART II CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. (A) NAME: R. BEALL, PH.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $319,133, 401(K) BONUS - $14,740; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $117,753; (B)(III) OTHER REPORTABLE COMPENSATION: HEALTH INSURANCE BENEFIT - $2,912, AUTOMOBILE ALLOWANCE - $4,824, OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $17,703; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $25,128, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $147,219, SERP (3) - $65,660; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $10,968, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $4,000, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $4,346 CYSTIC FIBROSIS FOUNDATION THERAPEUTICS, INC. EIN 91-2059167. (A) NAME: R. BEALL, PH.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $161,296, 401(K) BONUS - $7,260; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $57,997; (B)(III) OTHER REPORTABLE COMPENSATION: HEALTH INSURANCE BENEFIT - $1,434, AUTOMOBILE ALLOWANCE - $2,376, OTHER BENEFITS INCLUDING GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $4,125; (C) DEFERRED COMPENSATION: LONG-TERM INCENTIVE PLAN BENEFIT (6) - $72,511, SERP (3) - $32,340; (D) NONTAXABLE BENEFITS: $0 CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $229,481; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $65,596; (B)(III) OTHER REPORTABLE COMPENSATION: OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $4,646, SECTION 457(B) PLAN (5) - $11,055; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $25,128, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $108,374, SERP (4) - $36,941; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $15,552, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $5,000, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $6,325 CYSTIC FIBROSIS FOUNDATION THERAPEUTICS, INC. EIN 91-2059167. (A) NAME: P. CAMPBELL, M.D.; (B)(I) BASE COMPENSATION: BASE SALARY - $118,606; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $32,309; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN (5) - $5,445; (C) DEFERRED COMPENSATION: LONG-TERM INCENTIVE PLAN BENEFIT (6) - $53,378, SERP (4) - $18,195; (D) NONTAXABLE BENEFITS: $0 CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. NAME: (A) R. MATTINGLY; (B)(I) BASE COMPENSATION: BASE SALARY - $358,018; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $95,553; (B)(III) OTHER REPORTABLE COMPENSATION: SECTION 457(B) PLAN (5) - $16,500; OTHER BENEFITS INCLUDING TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $5,249; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $25,128, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $163,713, SERP (4) - $78,504; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $10,968, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $1,800, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $4,346 CYSTIC FIBROSIS FOUNDATION - HEADQUARTERS. (A) NAME: V. TWIGG; (B)(I) BASE COMPENSATION: BASE SALARY - $244,233; (B)(II) BONUS & INCENTIVE COMPENSATION: ANNUAL INCENTIVE PLAN BENEFIT (1) - $62,993; (B)(III) OTHER REPORTABLE COMPENSATION: TAXABLE GENERAL ORGANIZATION GROUP TERM LIFE INSURANCE PREMIUM - $1,611, SECTION 457(B) PLAN (5) - $16,391; (C) DEFERRED COMPENSATION: RETIREMENT BENEFIT (2) - $25,128, LONG-TERM INCENTIVE PLAN BENEFIT (6) - $68,566; (D) NONTAXABLE BENEFITS: EMPLOYER CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $16,571, EMPLOYEE CONTRIBUTION TO FLEXIBLE SPENDING ACCOUNT BENEFIT - $5,000, EMPLOYEE CONTRIBUTION TO GENERAL ORGANIZATION HEALTH PLAN BENEFIT - $4,690 (1) THIS IS AN AWARD BASED ON ACHIEVEMENT OF ANNUAL PERFORMANCE STANDARDS ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. (2) THIS IS THE EMPLOYER CONTRIBUTION MADE UNDER THE CYSTIC FIBROSIS FOUNDATION 401(K) PLAN FOR THE 2011 PLAN YEAR. (3)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 DECEMBER 31, 2012. 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. (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 AGE 60. C. IN THE EVENT OF A CFF BANKRUPTCY, PARTICIPANTS ARE 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. AN INDEPENDENT ACTUARY DEVELOPED THE CONTRIBUTION FORMULA PURSUANT TO WHICH SERP CONTRIBUTION AMOUNTS ARE DETERMINED. 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 $16,500). 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, BASED ON ACHIEVEMENT OF PERFORMANCE OBJECTIVES ESTABLISHED IN ADVANCE BY THE COMPENSATION COMMITTEE OF THE BOARD. EACH YEAR, A NEW THREE-YEAR PERFORMANCE PERIOD BEGINS. AS REQUIRED BY THE FORM 990 INSTRUCTIONS, THE AMOUNTS REPORTED ON THIS FORM 990 REFLECT AN ESTIMATE OF THE PORTION OF EACH AWARD THAT THE EXECUTIVE ACCRUED UNDER THE PLAN FOR PERFORMANCE IN 2011 (I.E., WITH RESPECT TO THE 2010-2012 AND THE 2011-2013 PERFORMANCE PERIODS), BUT THE AMOUNTS REPORTED HAVE NOT BEEN EARNED, AWARDED OR PAID UNDER THE PLAN. THE INDIVIDUAL MUST BE EMPLOYED ON 12/31/12 AND 12/31/13 TO BE ELIGIBLE TO RECEIVE FULL PAYMENT OF THE AWARD FOR THE 2010-2012 AND THE 2011-2013 PERFORMANCE PERIODS, RESPECTIVELY.
Schedule J (Form 990) 2011

Additional Data


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

Department of the Treasury
Internal Revenue Service
NonCash Contributions
Right pointing arrow large imageComplete if the organization answered "Yes" on Form 990, Part IV, lines 29 or 30.
Right pointing arrow large image Attach to Form 990.
OMB No. 1545-0047
2011
Open to Public Inspection
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Part I
Types of Property
(a)
Check if applicable 		(b)
Number of Contributions or items contributed 		(c)
Noncash contribution amounts reported on
Form 990, Part VIII, line 1g 		(d)
Method of determining
noncash contribution amounts
1 Art—Works of art ....        
2 Art—Historical treasures .        
3 Art—Fractional interests ..        
4 Books and publications ..      
5 Clothing and household
goods ....... 		     
6 Cars and other vehicles ..        
7 Boats and planes ....        
8 Intellectual property ...        
9 Securities—Publicly traded . X 1 532,764 FMV
10 Securities—Closely held stock .        
11 Securities—Partnership, LLC,
or trust interests .... 		       
12 Securities—Miscellaneous ..        
13 Qualified conservation
contribution—Historic
structures ..... 		       
14 Qualified conservation
contribution—Other ... 		       
15 Real estate—Residential .        
16 Real estate—Commercial ..        
17 Real estate—Other ...        
18 Collectibles .....        
19 Food inventory ...        
20 Drugs and medical supplies .        
21 Taxidermy ......        
22 Historical artifacts ....        
23 Scientific specimens ..        
24 Archeological artifacts ...        
25 Other Right pointing arrow large image ( )
26 Other Right pointing arrow large image( )
27 Other Right pointing arrow large image( )
28 Other Right pointing arrow large image ( )
29
Number of Forms 8283 received by the organization during the tax year for contributions
for which the organization completed Form 8283, Part IV, Donee Acknowledgement ...
29
0
Yes
No
30a
During the year, did the organization receive by contribution any property reported in Part I, lines 1-28 that it
must hold for at least three years from the date of the initial contribution, and which is not required to be used
for exempt purposes for the entire holding period? ..................
30a
 
No
b
If "Yes," describe the arrangement in Part II.
31
Does the organization have a gift acceptance policy that requires the review of any non-standard contributions?
31
Yes
 
32a
Does the organization hire or use third parties or related organizations to solicit, process, or sell noncash
contributions? ............................
32a
 
No
b
If "Yes," describe in Part II.
33
If the organization did not report revenues in column (c) for a type of property for which column (a) is checked,
describe in Part II.
For Privacy Act and Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 51227J
Schedule M (Form 990) 2011
Schedule M (Form 990) 2011
Page 2
Part II
Supplemental Information. Complete this part to provide the information required by Part I, lines 30b,
32b, and 33 and whether the organization is reporting in Part I, column (b) the number of contributions, the number of items received, or a combination of both. Also complete this part for any additional information.
Identifier Return Reference Explanation
Schedule M (Form 990) 2011
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 to provide any additional information.
MediumBullet Attach to Form 990 or 990-EZ.
OMB No. 1545-0047
2011
Open to Public
Inspection
Name of the organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
 
Employer identification number

13-1930701
Identifier Return Reference Explanation
OTHER PROGRAM SERVICES PART III, LINE 4D COMMUNITY SERVICES - THE CYSTIC FIBROSIS FOUNDATION PROVIDES YEAR-ROUND EFFORTS TO EDUCATE, INFORM AND EMPOWER PATIENTS 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 THOSE WITH CYSTIC FIBROSIS. APPROXIMATELY 27,000 PATIENTS WERE SERVED IN 2011, INCLUDING APPROXIMATELY 866 PATIENTS WHO WERE NEWLY DIAGNOSED.
REVIEW OF 990 BY GOVERNING BODY PART VI, SECTION B, LINE 11B (PAGE 6 CORE FORM) 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 FOUNDATION'S ERISA ATTORNEYS REVIEW THE EXECUTIVE COMPENSATION SECTIONS OF THE FORM 990 TO ENSURE COMPLETENESS AND ACCURACY. THE AUDIT COMMITTEE OF THE BOARD OF TRUSTEES ALSO REVIEWS THE FORM 990 AS PART OF ITS CHARTERED RESPONSIBILITIES.
CONFLICT OF INTEREST MONITORING PART VI, SECTION B, LINE 12C (PAGE 6 CORE FORM) A CONFLICT OF INTEREST DISCLOSURE STATEMENT IS COMPLETED ANNUALLY BY EACH BOARD MEMBER AND OFFICER. 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 2011 AND HAD NO CONFLICTS OF INTEREST AS DEFINED BY THE POLICY.
DETERMINING COMPENSATION PART VI, SECTION B, LINE 15A AND 15B (PAGE 6 CORE FORM) 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 ASSURING THE DEVELOPMENT OF THE MEANS TO CURE AND CONTROL CF AND IMPROVING THE QUALITY OF LIFE FOR THOSE WITH THE DISEASE. 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 EXECUTIVE'S TOTAL COMPENSATION, INCLUDING BUT NOT LIMITED TO BASE SALARY, BONUSES, PERQUISITES, FRINGE BENEFITS, AND INCENTIVE AND DEFERRED COMPENSATION ARRANGEMENTS. UPON THE EXECUTIVE'S 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 EXECUTIVE'S ENTIRE COMPENSATION PACKAGES 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 COMMITTEE'S COMPLIANCE WITH THE IRS INTERMEDIATE SANCTIONS RULES. THE PROCESS DESCRIBED ABOVE WAS LAST USED IN 2009 TO ESTABLISH COMPENSATION FOR THE FOLLOWING OFFICERS OR POSITIONS: PRESIDENT & CEO EXECUTIVE VICE PRESIDENT & COO EXECUTIVE VICE PRESIDENT FOR MEDICAL AFFAIRS SENIOR VICE PRESIDENT & CFO IN ADDITION, IN DECEMBER 2010, THE COMPENSATION COMMITTEE REVIEWED THE EXECUTIVES' PERFORMANCE, RECENT INDEPENDENTLY PREPARED COMPENSATION DATA, AND OTHER CHANGES RELEVANT TO THE ENVIRONMENT OF THE CF FOUNDATION TO APPROVE INCREASES IN THE EXECUTIVES' SALARY FOR CALENDAR YEAR 2011. THE COMPENSATION COMMITTEE DOCUMENTED THE BASIS FOR ITS DETERMINATION IN THE MINUTES OF ITS MEETING. THESE MINUTES WERE REVIEWED AND APPROVED AT THE FOLLOWING MEETING OF THE COMPENSATION COMMITTEE.
PUBLIC INSPECTION PART VI, SECTION C, LINE 19 (PAGE 6 CORE FORM) FORMS 1023 AND 990-T FOR THE ORGANIZATION WERE AVAILABLE ON ITS WEBSITE, CFF.ORG AND THE ORGANIZATION'S WEBSITE PROVIDED A LINK TO GUIDESTAR.ORG FOR ACCESS TO FORM 990 DURING 2011. THE FOUNDATION'S 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 ALSO AVAILABLE ON THE FOUNDATION'S WEBSITE, WWW.CFF.ORG DURING 2011. THE BOARD AND OFFICER CONFLICT OF INTEREST POLICY AND THE AUDITED FINANCIAL STATEMENTS WERE AVAILABLE ON THE FOUNDATION'S WEBSITE, WWW.CFF.ORG DURING 2011.
OTHER CHANGE IN NET ASSETS FORM 990, PART XI, LINE 5 UNREALIZED GAIN ON INVESTMENTS -11,046,677 OTHER CHANGES IN NET ASSETS - CHANGE IN EQUITY IN SUBSIDIARY -12,656,688 ------------ TOTAL -23,703,365
COMPENSATION OF OFFICERS, DIRECTORS, TRUSTEES, KEY EMPLOYEES, ETC FORM 990, PART VII, SECTION A NAME AND TITLE J. TAYLOR CRANDALL, TRUSTEE AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE MICHAEL L. BEATTY, TRUSTEE AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE RICHARD L. DANDURAND, VICE CHAIR AVG HRS WORKED 5 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE RICHARD J. GRAY, TRUSTEE AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE BARRY M. GUMP, TRUSTEE AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE SUSAN L. HOOK, VICE CHAIR AVG HRS WORKED 5 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE CATHERINE C. MCLOUD, CHAIR AVG HRS WORKED 7 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE CHAD T. MOORE, TRUSTEE AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE DAVID A. MOUNT, TRUSTEE AVG HRS WORKED 5 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE GARY B. SABIN, EXEC VICE CHAIRMAN AVG HRS WORKED 5 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE Christy Shaffer,PH.D. TRUSTEE AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE STEVEN SHAK, M.D., TRUSTEE AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE CHARLES J. THAYER, TREASURER AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE THEODORE J. TORPHY,PH.D. TRUSTEE AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE AMY S. WEINBERG, TRUSTEE AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE PAUL W. WHETSELL, TRUSTEE AVG HRS WORKED 5 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE KC BRYAN WHITE, TRUSTEE AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE ROBERT KAPLAN, TRUSTEE AVG HRS WORKED 3 HRS POSITION DIRECTOR REPORTABLE COMP FROM THE ORG NONE REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG NONE NAME AND TITLE ROBERT J. BEALL, PH.D., PRES/CEO AVG HRS WORKED 34 HRS POSITION DIRECTOR & OFFICER REPORTABLE COMP FROM THE ORG 477,065 REPORTABLE COMP FROM RELATED ORG 234,488 EST. AMT OF OTHER COMP FROM THE ORG 362,172 NAME AND TITLE C. RICHARD MATTINGLY, EXEC VP/COO AVG HRS WORKED 50 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 475,320 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 284,459 NAME AND TITLE PRESTON W. CAMPBELL, M.D., EXEC VP OF MEDICAL AFFAIRS AVG HRS WORKED 34 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 310,778 REPORTABLE COMP FROM RELATED ORG 156,360 EST. AMT OF OTHER COMP FROM THE ORG 268,893 NAME AND TITLE VERA H. TWIGG, SR VP & CFO AVG HRS WORKED 50 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 325,228 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 119,955 NAME AND TITLE ANN PALMER, SR VP OF FIELD MGMT AVG HRS WORKED 50 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 233,610 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 42,419 NAME AND TITLE DANIEL KLEIN, SR VP - CFFP AVG HRS WORKED 50 HRS POSITION OFFICER REPORTABLE COMP FROM THE ORG 248,172 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 29,128 NAME AND TITLE GREGORY AUGUST, CIO AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 218,198 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 44,500 NAME AND TITLE DAVID MCLOUGHLIN, SR VP OF OPS AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 267,117 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 49,005 NAME AND TITLE GLEN GOLDMARK, VP OF HR AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 213,637 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 39,578 NAME AND TITLE AMY DEMARIA, SR VP OF COMM AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 212,990 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 28,683 NAME AND TITLE MARY B. DWIGHT, VP GOVT AFFAIRS AVG HRS WORKED 50 HRS POSITION HIGHEST COMP. EMPLOYEE REPORTABLE COMP FROM THE ORG 195,488 REPORTABLE COMP FROM RELATED ORG NONE EST. AMT OF OTHER COMP FROM THE ORG 50,744 TOTAL REPORTABLE COMP FROM THE ORG 3,177,603 TOTAL REPORTABLE COMP FROM RELATED ORG 390,848 TOTAL EST. AMT OF OTHER COMP FROM THE ORG 1,319,535
HOURS DEVOTED FOR RELATED ORGANIZATION FORM 990 PART VII NAME:Robert J. Beall, Ph.D. TITLE:President & CEO HOURS:23
HOURS DEVOTED FOR RELATED ORGANIZATION FORM 990 PART VII NAME:C. Richard Mattingly TITLE:Exec VP and COO HOURS:10
HOURS DEVOTED FOR RELATED ORGANIZATION FORM 990 PART VII NAME:Preston W. Campbell, MD TITLE:Exec VP of Medical Affairs HOURS:23
HOURS DEVOTED FOR RELATED ORGANIZATION FORM 990 PART VII NAME:Vera H. Twigg TITLE:Sr. VP and CFO HOURS:10
For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.
Cat. No. 51056K
Schedule O (Form 990 or 990-EZ) 2011

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" to Form 990, Part IV, line 33, 34, 35, 36, or 37.
MediumBulletAttach to Form 990. MediumBullet See separate instructions.

OMB No. 1545-0047
2011
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 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 FOUNDATION PHARMACY LLC
6931 ARLINGTON RD
BETHESDA,MD20814
51-0636432 		PROGRAM MGT DE 24,659,724 1,958,607 NA
 
(2) cystic fibrosis patient assistance fdn
6931 arlington rd
bethesda,MD20814
90-0350985 		patient asst DE 3,525,197 3,580,629 na
 








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 organization
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 Privacy Act and Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50135Y
Schedule R (Form 990) 2011
Schedule R (Form 990) 2011
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
(1) CYSTIC FIBROSIS SERVICES INC
6931 ARLINGTON RD
BETHESDA,MD20814
52-1850490 		PHARMACY MD CFF PHARMACY
  		C 14,385,471 32,220,396 100.000 %












Schedule R (Form 990) 2011
Schedule R (Form 990) 2011
Page 3
Part V
Transactions With Related Organizations (Complete if the organization answered "Yes" on Form 990, Part IV, line 34, 35, 35A, or 36.)
Note. Complete line 1 if any entity is listed in Parts II, III or IV.
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 (iv) rent from a controlled entity . . . . . . . . . . . . . . . . . . . . . . .
1a
Yes
 
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
Yes
 
e Loans or loan guarantees by related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1e
 
No
f Sale of assets to related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1f
 
No
g Purchase of assets from related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1g
 
No
h Exchange of assets with related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1h
 
No
i Lease of facilities, equipment, or other assets to related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1i
 
No
j Lease of facilities, equipment, or other assets from related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . .
1j
 
No
k Performance of services or membership or fundraising solicitations for related organization(s) . . . . . . . . . . . . . . . . . . . .
1k
Yes
 
l Performance of services or membership or fundraising solicitations by related organization(s) . . . . . . . . . . . . . . . . . . . .
1l
 
No
m Sharing of facilities, equipment, mailing lists, or other assets with related organization(s) . . . . . . . . . . . . . . . . . . . . .
1m
Yes
 
n Sharing of paid employees with related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1n
Yes
 
o Reimbursement paid to related organization(s) for expenses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1o
 
No
p Reimbursement paid by related organization(s) for expenses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1p
 
No
q Other transfer of cash or property to related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1q
 
No
r Other transfer of cash or property from related organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1r
Yes
 
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 other organization 		(b)
Transaction
type(a-r) 		(c)
Amount involved 		(d)
Method of determining amount involved
(1) CYSTIC FIBROSIS SERVICES INC

 A(I) 38,709 FMV
(2) CYSTIC FIBROSIS FOUNDATION THERAPEUTICS

 B 49,932,523 FMV
(3) CYSTIC FIBROSIS FOUNDATION GROUP

 C 81,863,236 FMV
(4) CYSTIC FIBROSIS SERVICES INC

 D 10,000,000 FMV
(5) CYSTIC FIBROSIS SERVICES INC

 B 8,729,961 FMV
(6) CYSTIC FIBROSIS SERVICES INC

 K 8,920,638 FMV
(7) CYSTIC FIBROSIS FOUNDATION THERAPEUTICS

 M 255,145 FMV
(8) CYSTIC FIBROSIS FOUNDATION THERAPEUTICS

 N 1,640,186 FMV
(9) CYSTIC FIBROSIS SERVICES INC

 R 13,762,061 FMV
Schedule R (Form 990) 2011
Schedule R (Form 990) 2011
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) 2011
Schedule R (Form 990) 2011
Page 5
Part VII
Supplemental Information
Complete this part to provide additional information for responses to questions on Schedule R (see instructions).
Identifier Return Reference Explanation
Additional Data


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