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
2010
Open to Public Inspection
A For the calendar year, or tax year beginning 01-01-2010 and ending 12-31-2010
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 $ 250,179,596
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 17
4 Number of independent voting members of the governing body (Part VI, line 1b) .... 4 16
5 Total number of individuals employed in calendar year 2010 (Part V, line 2a) ... 5 308
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) ......... 94,548,345 106,799,244
9 Program service revenue (Part VIII, line 2g) ......... 17,000,938 21,411,864
10 Investment income (Part VIII, column (A), lines 3, 4, and 7d ) .... -38,516,232 5,617,212
11 Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e) 744,699 639,501
12 Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12)................... 73,777,750 134,467,821
Expenses; 13 Grants and similar amounts paid (Part IX, column (A), lines 1–3 )... 78,204,458 21,487,961
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) 22,968,489 24,796,813
16a Professional fundraising fees (Part IX, column (A), line 11e).... 0 0
b Total fundraising expenses (Part IX, column (D), line 25) MediumBullet10,029,667    
17 Other expenses (Part IX, column (A), lines 11a–11d, 11f–24f).... 20,146,198 21,688,722
18 Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25) 121,319,145 67,973,496
19 Revenue less expenses. Subtract line 18 from line 12...... -47,541,395 66,494,325
Net Assets or Fund Balances; Beginning of Current Year End of Year
20 Total assets (Part X, line 16)............ 169,126,881 221,040,934
21 Total liabilities (Part X, line 26)............ 43,054,165 32,747,225
22 Net assets or fund balances. Subtract line 21 from line 20 ..... 126,072,716 188,293,709
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's Use Only Preparer's
signatureBig Right Arrow 		Date
right pointing bullet image Preparer’s taxpayer identification number
(see instructions)
Firm’s name (or yours
if self-employed),
address, and ZIP + 4Big Right Arrow




 		EIN right pointing bullet image
Phone no. right pointing bullet image
May the IRS discuss this return with the preparer shown above? (see instructions) .........
For Privacy Act and Paperwork Reduction Act Notice, see the separate instructions.
Cat. No. 11282Y
Form 990 (2010)
Form 990 (2010)
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 exempt purpose achievements for each of the organization’s three largest program services 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 $ 31,896,940 including grants of $ 20,891,238 ) (Revenue $ 1,616,348 )
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. -Cayston, a new inhaled antibiotic developed by Gilead Sciences, Inc., was approved in 2010 by the FDA. This was the first drug to progress completely through CFFT's Therapeutics Development Program and it offers an antibiotic alternative for CF patients who battle recurrent lung infections and often develop resistance to existing antibiotics. -Thanks in large part to the Foundation, in 2010, all 50 states and the District of Columbia began requiring that all newborns be screened for cystic fibrosis. In 2005, only five states required newborn screening. This progress is critically important because early diagnosis allows for early treatment, which leads to better overall health. The median predicted age of survival for a person with CF is in the mid-30s. More than 45 percent of people with CF are age 18 or older. -Medical programs consist of approximately 330 grants and other costs to support scientific studies/investigations and cystic fibrosis centers. Approximately 197 grants totaling $11.6 million were awarded to cystic fibrosis care centers serving approximately 24,000 patients.
4b (Code:   ) (Expenses $ 9,482,058 including grants of $ 596,723 ) (Revenue $ 8,921,267 )
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 2010, CFFP served 9,150 patients. CFFP fulfilled 80,229 orders to CF patients under manufacturer programs to assist patients in need. CFFP staff assisted CF patients with 176,505 prescriptions in 2010 by filing primary, secondary and tertiary insurance claims, as needed. Cystic Fibrosis Patient Assistance Foundation, LLC (CFPAF) responded to 9,480 calls for assistance and provided $596,723 in patient assistance grants to 696 CF patients in need during 2010.
4c (Code:   ) (Expenses $ 8,795,940 including grants of $ 0 ) (Revenue $ 0 )
Public and Professional Information and Education - to broaden its reach and to support its mission, the CF Foundation has programs designed to improve the knowledge of CF patients and their families, medical professionals and the general public regarding the disease. In 2010, there were 26 publications, 11 webcasts and 24 videos produced and made available for patients and their families and 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 2010, nearly 2 million unique visitors came to the organization's website.
4d Other program services. (Describe in Schedule O.)
(Expenses $ 2,485,924 including grants of $ 0 ) (Revenue $ 0 )
4e Total program service expensesMediumBullet$ 52,660,862
Form 990 (2010)
Form 990 (2010)
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 where 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 term, permanent,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
Yes
 
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
 
No
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, and program service activities outside the United States? 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
Form 990 (2010)
Form 990 (2010)
Page 4
Part IV
Checklist of Required Schedules (continued)
20a
Did the organization operate one or more hospitals? If “Yes,” complete Schedule H.....
20a
 
No
b
Did the organization attach its audited financial statement to this return? Note: All Form 990 filers that operate one or more hospitals must attach audited financial statements. .....
20b
 
 
21
Did the organization report more than $5,000 of grants and other assistance to governments and organizations 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 a grant selection committee member, or to a person related to such an individual? 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 M
29
 
No
30
Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If “Yes,” complete Schedule M............
30
 
No
31
Did the organization liquidate, terminate, or dissolve and cease operations? If “Yes,” complete Schedule N,
Part I...........................
31
 
No
32
Did the organization sell, exchange, dispose of, or transfer more than 25% of its net assets? If “Yes,” complete Schedule N, Part II.......................
32
 
No
33
Did the organization own 100% of an entity disregarded as separate from the organization under Regulations sections 301.7701-2 and 301.7701-3? If “Yes,” complete Schedule R, Part I........ Click to see attachment
33
Yes
 
34
Was the organization related to any tax-exempt or taxable entity? If “Yes,” complete Schedule R, Parts II, III, IV, and V, line 1..................... Click to see attachment
34
Yes
 
35
Is any related organization a controlled entity within the meaning of section 512(b)(13)? .....
35
Yes
 
a
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
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 (2010)
Form 990 (2010)
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
166
b
Enter the number of Forms W-2G included in line 1a. Enter -0- if not applicable.
1b
0
c
Did the organization comply with backup withholding rules for reportable payments to vendors and reportable gaming (gambling) winnings to prize winners? ..................
1c
Yes
 
2a
Enter the number of employees reported on Form W-3, Transmittal of Wage and Tax Statements filed for the calendar year ending with or within the year covered by this return .....................
2a
308
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
Yes
 
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 (2010)
Form 990 (2010)
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 ..............
1a
17
b
Enter the number of voting members included in line 1a, above, who are independent .................
1b
16
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
Does the organization have members or stockholders? ................
6
 
No
7a
Does the organization have members, stockholders, or other persons who may elect one or more members of the governing body? .........................
7a
 
No
b
Are any decisions of the governing body subject to approval by members, stockholders, or other persons? ..
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
Does the organization have local chapters, branches, or affiliates? ............
10a
Yes
 
b
If “Yes,” does the organization have written policies and procedures governing the activities of such chapters, affiliates, and branches to ensure their operations are consistent with those of the organization? ....
10b
Yes
 
11a
Has the organization provided a 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
Does the organization have a written conflict of interest policy? If “No,” go to line 13.......
12a
Yes
 
b
Are officers, directors or trustees, and key employees required to disclose annually interests that could give rise to conflicts? ...........................
12b
Yes
 
c
Does the organization regularly and consistently monitor and enforce compliance with the policy? If “Yes,” describe in Schedule O how this is done ....................
12c
Yes
 
13
Does the organization have a written whistleblower policy? ...............
13
Yes
 
14
Does 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 a or b, 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,” has the organization adopted a written policy or procedure requiring the organization to evaluate its participation in joint venture arrangements under applicable federal tax law, and taken 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
AZ , AR , CA , CO , CT , FL , GA , IL , IN , KS , KY , MD , MA , MI , MN , MS , NH , NJ , NM , NY , ND , 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 make these available. Check all that apply.
19
Describe in Schedule O whether (and if so, how), the organization makes its governing documents, conflict of interest policy, and financial statements available to the public.
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 (2010)
Form 990 (2010)
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 (check all that apply) 		(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) Amy S Weinberg
Trustee
 3.0 X           0 0 0
(2) Barry M Gump
Trustee
 3.0 X           0 0 0
(3) Catherine C McLoud
Chair
 3.0 X           0 0 0
(4) Chad T Moore
Treasurer
 3.0 X           0 0 0
(5) Charles J Thayer
Vice Chair
 3.0 X           0 0 0
(6) David A Mount
Trustee
 3.0 X           0 0 0
(7) Gary B Sabin
Executive Vice Chair
 3.0 X           0 0 0
(8) J Taylor Crandall
Treasurer
 3.0 X           0 0 0
(9) KC Bryan White
Trustee
 3.0 X           0 0 0
(10) Paul W Whetsell
Trustee
 3.0 X           0 0 0
(11) Richard J Gray
Trustee
 3.0 X           0 0 0
(12) Richard L Dandurand
Vice Chairman
 3.0 X           0 0 0
(13) Robert S Kaplan
Trustee
 3.0 X           0 0 0
(14) Steven Shak MD
Trustee
 3.0 X           0 0 0
(15) Susan L Hook
Vice Chair
 3.0 X           0 0 0
(16) Theodore J Torphy PhD
Trustee
 3.0 X           0 0 0
(17) Robert J Beall PhD
President & CEO
 34.0 X   X       403,094 198,548 239,406
Form 990 (2010)
Form 990 (2010)
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 (check all that apply) 		(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) C Richard Mattingly
Exec VP and COO
 50.0     X       427,271 0 172,429
(19) Preston W Campbell MD
Exec VP of Medical Affairs
 34.0     X       278,976 140,934 157,898
(20) Vera H Twigg
Sr. VP and CFO
 50.0     X       273,807 0 82,369
(21) Daniel Klein
Sr. Vice President - CFFP
 50.0       X     202,479 0 23,164
(22) Ann Palmer
SR. VP OF FIELD MANAGEMENT
 50.0       X     199,614 0 34,563
(23) David McLoughlin
Sr. VP OF OPERATIONS
 50.0         X   208,853 0 45,817
(24) Gregory August
Chief Information Officer
 50.0         X   179,978 0 41,268
(25) Glen Goldmark
VP of Human Resources
 50.0         X   176,282 0 34,330
(26) Amy DeMaria
Sr VP of Communications
 50.0         X   175,994 0 24,704
(27) Maureen Fraser
SR. DIR of Field Management
 50.0         X   163,765 0 32,542






1b Sub-Total................MediumBullet
c Total from continuation sheets to Part VII, Section A....MediumBullet
d Total (add lines 1b and 1c)............MediumBullet 2,690,113 339,482 888,490
2
Total number of individuals (including but not limited to those listed above) who received more than $100,000 in reportable compensation from the organizationMediumBullet11
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.
(A)
Name and business address 		(B)
Description of services 		(C)
Compensation
ICS CORPORATION
2225 RICHMOND ST
PHILADELPHIA,PA19125 		MAILSHOP 1,612,213
DIAMONDBACK DIRECT
844 RITCHIE HWY
SEVERNA PARK,MD21146 		MAILSHOP 1,087,635
HUB LABELS
18223 SHAWLEY DRIVE
HAGERSTOWN,MD21740 		PRINTING 1,064,775
RMI DIRECT MARKETING
42 OLD RIDGEWAY RD
DANBURY,CT06810 		LIST MANAGEMENT 603,656
CENTERPLATE
700 14TH ST
DENVER,CO80202 		EVENT CATERING 493,835
2
Total number of independent contractors (including but not limited to those listed above) who received more than $100,000 in compensation from the organization MediumBullet33
Form 990 (2010)
Form 990 (2010)
Page 9
Part VIII
Statement of Revenue
(A)
Total revenue 		(B)
Related or
exempt
function
revenue 		(C)
Unrelated
business
revenue 		(D)
Revenue
excluded from
tax under sections
512, 513, or 514
Contributions, gifts, grants and other similar amounts 1a Federated campaigns..1a  
b Membership dues....1b  
c Fundraising events....1c  
d Related organizations...1d 90,875,118
e Government grants (contributions)1e  
f All other contributions, gifts, grants, and
similar amounts not included above1f 		15,924,126
g Noncash contributions included in lines 1a-1f:$  
h Total. Add lines 1a-1f.......MediumBullet 106,799,244
Program Service Revenue Business Code
2a SCIENTIFIC CONFERENCE 611,600 1,616,348 1,616,348    
b PROGRAM MANAGEMENT FEES 541,900 7,344,991 7,344,991    
c CALL CENTER 541,900 1,576,276 1,576,276    
d LICENSE FEES 900,003 10,874,249     10,874,249
e
f All other program service revenue .        
g Total. Add lines 2a–2f........MediumBullet 21,411,864
Other Revenue 3 Investment income (including dividends, interest
and other similar amounts).....MediumBullet 2,676,228     2,676,228
4 Income from investment of tax-exempt bond proceeds..MediumBullet 0      
5 Royalties............MediumBullet 171,894     171,894
(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 118,652,759  
b Less: cost or other basis and sales expenses 115,711,775  
c Gain or (loss) 2,940,984  
d Net gain or (loss)..........MediumBullet 2,940,984     2,940,984
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 533,110 467,607     467,607
b            
c            
d All other revenue ....        
e Total. Add lines 11a–11d ......MediumBullet 467,607
12 Total revenue. See Instructions....MediumBullet 134,467,821 10,537,615   17,130,962
Form 990 (2010)
Form 990 (2010)
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).
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 U.S. See Part IV, line 21 20,885,838 20,885,838
2 Grants and other assistance to individuals in the U.S. See Part IV, line 22 596,723 596,723
3 Grants and other assistance to governments, organizations, and individuals outside the U.S. See Part IV, lines 15 and 16 5,400 5,400
4 Benefits paid to or for members 0  
5 Compensation of current officers, directors, trustees, and key employees .... 3,480,415 2,556,735 510,437 413,243
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 17,189,270 12,627,344 2,520,976 2,040,950
8 Pension plan contributions (include section 401(k) and section 403(b) employer contributions) .... 899,349 660,667 131,898 106,784
9 Other employee benefits ....... 1,869,019 1,372,993 274,110 221,916
10 Payroll taxes ........... 1,358,760 1,015,201 175,554 168,005
11 Fees for services (non-employees):        
a Management ...... 0      
b Legal ......... 418,245 335,784 82,461 0
c Accounting ........... 177,810 58,991 118,819 0
d Lobbying ........... 45,600 45,600 0 0
e Professional fundraising. See Part IV, line 17.. 0  
f Investment management fees ...... 101,164 0 101,164 0
g Other .......... 2,349,407 1,533,403 0 816,004
12 Advertising and promotion .... 10,996 6,593 2,028 2,375
13 Office expenses ....... 1,385,665 1,216,906 95,540 73,219
14 Information technology ...... 2,763,447 2,119,331 208,244 435,872
15 Royalties .. 0      
16 Occupancy ........... 1,459,323 1,134,555 204,654 120,114
17 Travel ............ 640,974 551,840 27,977 61,157
18 Payments of travel or entertainment expenses for any federal, state, or local public officials ...... 0      
19 Conferences, conventions, and meetings .... 2,383,462 2,335,003 18,509 29,950
20 Interest ........... 0      
21 Payments to affiliates ....... 0      
22 Depreciation, depletion, and amortization ..... 469,209 411,782 30,288 27,139
23 Insurance .............. 378,346 301,152 29,778 47,416
24 Other expenses. Itemize expenses not covered above. (Expenses grouped together and labeled miscellaneous may not exceed 5% of total expenses shown on line 25 below.)
a DIRECT MAIL PRINTING 3,758,425 1,149,326 0 2,609,099
b DIRECT MAIL POSTAGE 3,354,197 1,025,713 0 2,328,484
c TRAINING 365,661 270,118 45,001 50,542
d MAILING LIST RENTAL 622,384 190,325 0 432,059
e QUALITY IMPROVEMENT TRAINING 149,283 149,283 0 0
f All other expenses 855,124 104,256 705,529 45,339
25 Total functional expenses. Add lines 1 through 24f 67,973,496 52,660,862 5,282,967 10,029,667
26 Joint costs. Check here MediumBullet if following
SOP 98-2 (ASC 958-720). Complete this line only if the organization reported in column (B) joint costs from a combined educational campaign and fundraising solicitation 		9,824,693 3,004,390 0 6,820,303
Form 990 (2010)
Form 990 (2010)
Page 11
Part X Balance Sheet
(A)
Beginning of year 		(B)
End of year
Assets 1 Cash—non-interest-bearing .......... 12,351,611 1 0
2 Savings and temporary cash investments ....... 13,681,118 2 10,129,208
3 Pledges and grants receivable, net ......... 24,734,094 3 23,195,345
4 Accounts receivable, net ......... 2,664,184 4 3,394,223
5 Receivables from current and former officers, directors, trustees, key employees, and highest compensated employees. Complete Part II of
Schedule L ..........   5  
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 ..........   6  
7 Notes and loans receivable, net .............   7  
8 Inventories for sale or use .............. 413,890 8 513,317
9 Prepaid expenses and deferred charges ............ 1,424,848 9 1,074,652
10a Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D 10a 6,977,144
b Less: accumulated depreciation. ..... 10b 5,023,094 2,052,042 10c 1,954,050
11 Investments—publicly traded securities .......... 83,584,449 11 99,508,241
12 Investments—other securities. See Part IV, line 11 ...... 21,265,585 12 37,241,095
13 Investments—program-related. See Part IV, line 11 ..   13  
14 Intangible assets .........   14  
15 Other assets. See Part IV, line 11 ........... 6,955,060 15 44,030,803
16 Total assets. Add lines 1 through 15 (must equal line 34)... 169,126,881 16 221,040,934
Liabilities 17 Accounts payable and accrued expenses . 7,876,059 17 10,639,429
18 Grants payable .......... 18,280,778 18 19,417,980
19 Deferred revenue .......... 1,566,466 19 2,689,816
20 Tax-exempt bond liabilities ..........   20  
21 Escrow or custodial account liability. Complete Part IV of Schedule D..   21  
22 Payables to current and former officers, directors, trustees, key
employees, highest compensated employees, and disqualified
persons. Complete Part II of Schedule L..........   22  
23 Secured mortgages and notes payable to unrelated third parties ..   23  
24 Unsecured notes and loans payable to unrelated third parties ....   24  
25 Other liabilities. Complete Part X of Schedule D..... 15,330,862 25 0
26 Total liabilities. Add lines 17 through 25..... 43,054,165 26 32,747,225
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 ..... 100,674,842 27 165,901,802
28 Temporarily restricted net assets ..... 22,579,133 28 19,046,213
29 Permanently restricted net assets ..... 2,818,741 29 3,345,694
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 ..... 126,072,716 33 188,293,709
34 Total liabilities and net assets/fund balances ..... 169,126,881 34 221,040,934
Form 990 (2010)
Form 990 (2010)
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
134,467,821
2
Total expenses (must equal Part IX, column (A), line 25) . . . . .
2
67,973,496
3
Revenue less expenses. Subtract line 2 from line 1 . . . .
3
66,494,325
4
Net assets or fund balances at beginning of year (must equal Part X, line 33, column (A)) . .
4
126,072,716
5
Other changes in net assets or fund balances (explain in Schedule O) . . . .
5
-4,273,332
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
188,293,709
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 (2010)
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
2010
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) 2010
Schedule A (Form 990 or 990-EZ) 2010
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) 2006 (b) 2007 (c) 2008 (d) 2009 (e) 2010 (f) Total
1 Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .... 112,053,277 125,762,419 112,573,276 94,548,345 106,799,244 551,736,561
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.. 112,053,277 125,762,419 112,573,276 94,548,345 106,799,244 551,736,561
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.           551,736,561
Section B. Total Support
Calendar year(or fiscal year beginning in) (a) 2006 (b) 2007 (c) 2008 (d) 2009 (e) 2010 (f) Total
7 Amounts from line 4.. 112,053,277 125,762,419 112,573,276 94,548,345 106,799,244 551,736,561
8 Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. 4,731,799 9,254,984 5,292,496 2,946,628 2,848,122 25,074,029
9 Net income from unrelated business activities, whether or not the business is regularly carried on.. 0 0 1,916 0 0 1,916
10 Other income. (Explain in Part IV.) Do not include gain or loss from the sale of capital assets.. 1,140,889 1,086,167 998,418 636,827 467,607 4,329,908
11 Total support (Add lines 7 through 10).           581,142,414
12
12
60,258,909
13
Section C. Computation of Public Support Percentage
14
14
94.940 %
15
15
94.639 %
16a
b
17a
b
18
Schedule A (Form 990 or 990-EZ) 2010
Schedule A (Form 990 or 990-EZ) 2010
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) 2006 (b) 2007 (c) 2008 (d) 2009 (e) 2010 (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) 2006 (b) 2007 (c) 2008 (d) 2009 (e) 2010 (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) 2010
Schedule A (Form 990 or 990-EZ) 2010
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. CF'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 FIBROSIS. 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.
OTHER INCOME INCLUDES MAILING LIST RENTAL REVENUE
 
 
Schedule A (Form 990 or 990-EZ) 2010

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
2010
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 in the heading of its
Form 990-EZ, or on 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) (2010)

Schedule B (Form 990, 990-EZ, or 990-PF) (2010)
Page 1 of 1 of Part I
Name of organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
  		Employer identification number

13-1930701
Part I
Contributors (see Instructions)
     
(a)
No.		 (b)
Name, address, and ZIP + 4		 (c)
Aggregate 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)
Aggregate contributions		 (d)
Type of contribution
 
 
 

     
 
   

$  




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

     
 
   

$  




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

     
 
   

$  




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

     
 
   

$  




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

     
 
   

$  




(Complete Part II if there is
a noncash contribution.)
Schedule B (Form 990, 990-EZ, or 990-PF) (2010)

Schedule B (Form 990, 990-EZ, or 990-PF) (2010)
Page 1 of 1 of Part II
Name of organization
CYSTIC FIBROSIS FOUNDATION- HEADQUARTERS
  		Employer identification number

13-1930701
Part II
Noncash Property (see Instructions)
     
(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) (2010)

Schedule B (Form 990, 990-EZ, or 990-PF) (2010)
Page 1 of 1 of Part III
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
aggregating 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 $  
(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) (2010)

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
2010
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, Part V, line 35a (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 on behalf of or in opposition to candidates for public office 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 funtion 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) 2010

Schedule C (Form 990 or 990-EZ) 2010
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
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) ...... 11,250  
b Total lobbying expenditures to influence a legislative body (direct lobbying) ....... 245,773  
c Total lobbying expenditures (add lines 1a and 1b) ................... 257,023  
d Other exempt purpose expenditures ........................ 67,716,473  
e Total exempt purpose expenditures (add lines 1c and 1d) ............... 67,973,496  
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) 2007 (b) 2008 (c) 2009 (d) 2010 (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 124,713 150,679 165,973 257,023 698,388
             
d Grassroots non-taxable 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 16,500 14,000 14,000 11,250 55,750
Schedule C (Form 990 or 990-EZ) 2010


Schedule C (Form 990 or 990-EZ) 2010
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)).
(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? If "Yes," describe in Part IV ..........................
 
 
 
j
Total. 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 carryover 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) if BOTH Part III-A, lines 1 and 2 are answered “No” OR if Part III-A, line 3 is answered “Yes”.
1
Dues, assessments and similar amounts from members .....................
1
 
2
Section 162(e) non-deductible 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, line 5; and Part ll-B, line 1i.
Also, complete this part for any additional information.
Identifier Return Reference Explanation
Schedule C (Form 990 or 990EZ) 2010

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, 11, or 12.
SchDMd Bullet Attach to Form 990. SchDMd Bullet See separate instructions.
OMB No. 1545-0047
2010
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 may 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–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 ........ 2d  
3
Number of conservation easements modified, transferred, released, extinguished, or terminated by the organization during
the taxable 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, 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, 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 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) 2010

Schedule D (Form 990) 2010
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 Investment earnings or 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 held as:
a
Board designated or quasi-endowment: SchDMd Bullet  
b
Permanent endowment: SchDMd Bullet  
c
Term endowment: SchDMd Bullet  
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
Investments—Land, Buildings, and Equipment. See Form 990, Part X, line 10.
Description of investment (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 ............   777,830 403,975 373,855
d Equipment ................   6,199,314 4,619,119 1,580,195
e Other .................        
Total. Add lines 1a-1e. (Column (d) should equal Form 990, Part X, column (B), line 10(c).)........SchDMdBullet 1,954,050
Schedule D (Form 990) 2010

Schedule D (Form 990) 2010
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 		7,492,504 F

(B) MARKETABLE ALT. INV. FUNDS 		26,630,169 F

(C) INTEREST IN PERPETUAL TRUSTS 		3,118,422 F






Total. (Column (b) should equal Form 990, Part X, col.(B) line 12.)Small Bullet 37,241,095
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) should 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
(1) INTERCOMPANY RECEIVABLE 39,368,519
(2) INVESTMENT IN SUBSIDIARY -5,393,313
(3) OTHER ASSETS 55,597
(4) LOAN TO SUBSIDIARY 10,000,000





Total. (Column (b) should equal Form 990, Part X, col.(B) line 15.)...........Small Bullet 44,030,803
Part X
Other Liabilities. See Form 990, Part X, line 25.
1.(a) Description of Liability (b) Amount
Federal Income Taxes  








Total. (Column (b) should equal Form 990, Part X, col.(B) line 25.)Small Bullet  
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) 2010

Schedule D (Form 990) 2010
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 - 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 should 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 should 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
FIN 48 FOOTNOTE FORM 990, SCHEDULE D, PART X, LINE 2 IN 2009, THE FOUNDATION ADOPTED AUTHORITATIVE GUIDANCE SPECIFIC TO THE ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES. THE ADOPTION DID NOT HAVE A MATERIAL EFFECT ON THE FINANCIAL STATEMENTS.
Schedule D (Form 990) 2010

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
2010
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 the grants or
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 grant funds 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 5,400
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
3a Sub-total ..... 0 0 5,400
b Total from continuation sheets to Part I ...      
c Totals (add lines 3a and 3b) 0 0 5,400
For Privacy Act and Paperwork Reduction Act Notice, see the Instructions for Form 990.Cat. No. 50082W Schedule F (Form 990) 2010
Schedule F (Form 990) 2010
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 QUAL IMPROV 5,400 CHECK      
             
             
             
             
             
             
             
             
             
             
             
             
             
             
             
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
1
3
Enter total number of other organizations or entities ........................MediumBullet
 
Schedule F (Form 990) 2010
Schedule F (Form 990) 2010Page 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) 2010
Schedule F (Form 990) 2010
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) 2010
Schedule F (Form 990) 2010
Page 5
Part V
Supplemental Information
Complete this part to provide the information (see instructions) required in Part I, line 2, and any additional information.
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) 2010
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
2010
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) 42,726       CF CARE CENTER
(2) Albany Medical CollegeElsmere A-107
Albany,NY12208 		14-1338310 501c(3) 88,030       CF CARE CENTER
(3) Alfred I DuPont Institute of the Nemours Foundati1600 Rockland Road
Wilmington,DE19899 		59-0634433 501c(3) 186,060       CF CARE CENTER
(4) All Children's HospitalDept 9010
PO Box 269
St Petersburg,FL33731 		59-0683252 501c(3) 73,830       CF CARE CENTER
(5) Arizona Board of Regents University of ArizonaSponsored Projects Services
PO Box 31020
Tucson,AZ857223308 		74-2652689 501c(3) 49,270       CF CARE CENTER
(6) Arkansas Children's Hospital Research Institute I800 Marshall Street
888 N Euclid Room 510
Little Rock,AR72202 		71-0694931 501c(3) 68,340       CF CARE CENTER
(7) Asthma and Allergy Specialists PA411 Billings Road
Slot 512-17
Charlotte,NC28211 		56-1913043 C Corp. 38,312       CF CARE CENTER
(8) Atlantic Health System100 Madison Avenue
Suite 104
Morristown,NJ07962 		52-1958352 501c(3) 66,360       CF CARE CENTER
(9) Atlantic Health System100 Madison Avenue
Morristown,NJ07962 		52-1958352 501c(3) 27,000       ADULT CARE
(10) Baylor College of MedicinePO Box 1
Houston,TX77212 		74-1613878 501c(3) 407,299       CF CARE CENTER
(11) Baylor College of MedicinePO Box 1
Houston,TX77212 		74-1613878 501c(3) 27,000       ADULT CARE
(12) Baystate Medical Center (95-196)759 Chestnut Street
Springfield,MA01199 		04-2790311 501c(3) 28,880       CF CARE CENTER
(13) Beth Israel Medical Center36 Seventh Avenue Suite 509
New York,NY10011 		13-5564934 501c(3) 87,740       CF CARE CENTER
(14) Board of Trustees Southern Illinois UniversityDivision of Pulmonary Medicine
Springfield,IL62794 		37-6005961 501c(3) 6,390       CF CARE CENTER
(15) California Pacific Medical Center Research Institu2200 Webster Street Room 405
PO Box 19636
San Francisco,CA94115 		94-0562680 501c(3) 16,710       CF CARE CENTER
(16) CAMC Health Education and Research InstitutePO Box 765
Charleston,WV25323 		55-0753754 501c(3) 14,360       CF CARE CENTER
(17) Carle Clinic AssociationDepartment of Pediatrics
Urbana,IL61801 		37-1188284 C. Corp. 10,598       CF CARE CENTER
(18) Case Western Reserve University10900 Euclid Avenue
602 W University Avenue
Cleveland,OH441067015 		34-1018992 501c(3) 42,500       RESEARCH
(19) Case Western Reserve University10900 Euclid Avenue
Cleveland,OH441067015 		34-1018992 501c(3) 97,200       RESEARCH STUDIES
(20) Case Western Reserve University10900 Euclid Avenue
Cleveland,OH441067015 		34-1018992 501c(3) 450,000       RESEARCH CENTERS
(21) Central Florida Pulmonary Group326 North Mills Avenue
Orlando,FL32803 		59-1760017 C Corp. 35,570       CF CARE CENTER
(22) Children's Healthcare of Atlanta1001 Johnson Ferry Road North
Atlanta,GA30342 		58-2367819 501c(3) 72,830       CF CARE CENTER
(23) Children's Hospital & Research Center at Oakland747 52nd Street
Oakland,CA94609 		94-0382330 501c(3) 33,270       CF CARE CENTER
(24) Children's Hospital & Research Center at Oakland747 52nd Street
Oakland,CA94609 		94-0382330 501c(3) 10,000       RESEARCH STUDIES
(25) Children's Hospital and Regional Medical Center4800 Sand Point Way NE
Seattle,WA981050371 		91-0564748 501c(3) 83,850       CF CARE CENTER
(26) Children's Hospital and Regional Medical Center4800 Sand Point Way NE
Seattle,WA981050371 		91-0564748 501c(3) 43,200       PILOT STUDIES
(27) Children's Hospital Central California9300 Valley Childrens Place
Madera,CA93638 		94-1294954 501c(3) 46,750       CF CARE CENTER
(28) Children's Hospital Corporation300 Longwood Ave
Boston,MA021155737 		04-2774441 501c(3) 163,148       TRAINING
(29) Children's Hospital Corporation300 Longwood Ave
Boston,MA021155737 		04-2774441 501c(3) 215,017       CF CARE CENTER
(30) Children's Hospital Corporation300 Longwood Ave
Boston,MA021155737 		04-2774441 501c(3) 42,500       RESEARCH
(31) Children's Hospital Corporation300 Longwood Ave
Boston,MA021155737 		04-2774441 501c(3) 27,000       ADULT CARE
(32) Children's Hospital Foundation at Westchester MediPediatric Pulmonology
Valhalla,NY10595 		13-3940462 501c(3) 65,010       CF CARE CENTER
(33) Children's Hospital Medical Center AkronOne Perkins Square
Munger Pavilion Room 106
Akron,OH443081062 		34-0714357 501c(3) 102,550       CF CARE CENTER
(34) Children's Hospital Medical Center AkronOne Perkins Square
Akron,OH443081062 		34-0714357 501c(3) 54,000       ADULT CARE
(35) Children's Hospital Medical Center CincinnatiResearch Accounting
Cincinnati,OH45229 		31-0833936 501c(3) 48,000       TRAINING
(36) Children's Hospital Medical Center CincinnatiResearch Accounting
3333 Burnet Avenue
Cincinnati,OH45229 		31-0833936 501c(3) 95,430       CF CARE CENTER
(37) Children's Hospital Medical Center CincinnatiResearch Accounting
3333 Burnet Avenue
Cincinnati,OH45229 		31-0833936 501c(3) 333,000       RESEARCH CENTERS
(38) Children's Hospital of Michigan3663 Woodward Ave S Ste 200
3333 Burnet Avenue
Detroit,MI48201 		38-1357994 501c(3) 74,860       CF CARE CENTER
(39) Children's Hospital Los AngelesResearch Institute
Los Angeles,CA90027 		95-1690977 501c(3) 78,740       CF CARE CENTER
(40) Children's Lung Specialists3838 Meadows Lane
4650 Sunset Blvd
Las Vegas,NV89107 		88-0271963 501c(3) 71,030       CF CARE CENTER
(41) Children's Medical CenterOne Childrens Plaza
Dayton,OH454041815 		31-0672132 501c(3) 76,230       CF CARE CENTER
(42) Children's Memorial Hospital2300 Childrens Plaza - Box 205
Chicago,IL60614 		36-2170833 501c(3) 48,000       TRAINING
(43) Children's Memorial Hospital2300 Childrens Plaza - Box 205
Chicago,IL60614 		36-2170833 501c(3) 108,334       CF CARE CENTER
(44) Children's Memorial Hospital2300 Childrens Plaza - Box 205
Chicago,IL60614 		36-2170833 501c(3) 27,000       QUALITY IMPROVEMENT
(45) Children's Memorial Hospital2300 Childrens Plaza - Box 205
Chicago,IL60614 		36-2170833 501c(3) 43,200       PILOT STUDIES
(46) Children's Mercy Hospital2401 Gillham Road
Kansas City,MO64108 		44-0605373 501c(3) 108,790       CF CARE CENTER
(47) Children's National Medical Center111 Michigan Avenue NW
Washington,DC20010 		52-1654453 501c(3) 79,640       CF CARE CENTER
(48) Children's National Medical Center111 Michigan Avenue NW
Washington,DC20010 		52-1654453 501c(3) 7,406       RESEARCH
(49) Children's Respiratory Center58 Bear Drive
Greenville,SC29605 		57-0971539 C Corp. 26,960       CF CARE CENTER
(50) Children's Specialty Group PLLCPO Box 11049
Norfolk,VA23517 		54-1871633 PLLC 65,240       CF CARE CENTER
(51) Christus Santa Rosa Healthcare333 North Santa Rosa
San Antonio,TX78207 		74-1109665 501c(3) 78,600       CF CARE CENTER
(52) Clinical Practices of the University of PennsylvanThe University of Pennsylvania Heal
Philadelphia,PA19104 		23-1352685 501c(3) 78,241       CF CARE CENTER
(53) Clinical Practices of the University of PennsylvanThe University of Pennsylvania Heal
Philadelphia,PA19104 		23-1352685 501c(3) 10,960       RESEARCH
(54) Clinical Practices of the University of PennsylvanThe University of Pennsylvania Heal
Philadelphia,PA19104 		23-1352685 501c(3) 306,000       RESEARCH CENTERS
(55) Connecticut Children's Medical Center282 Washington Street
Hartford,CT06106 		06-0646755 501c(3) 46,329       CF CARE CENTER
(56) Connecticut Children's Medical Center282 Washington Street
Hartford,CT06106 		06-0646755 501c(3) 32,109       QUALITY IMPROVEMENT
(57) COOK CHILDREN'S MEDICAL CENTER801 Seventh Avenue
Ft Worth,TX76104 		75-2051646 501c(3) 108,840       CF CARE CENTER
(58) Daughters of Charing Health Services of Austin4900 Mueller Blvd
Austin,TX78723 		74-1109643 501c(3) 54,730       CF CARE CENTER
(59) Drexel University College of Medicine3201 Arch St Suite 100
Philadelphia,PA191291191 		23-2979433 501c(3) 90,110       CF CARE CENTER
(60) Drexel University College of Medicine3201 Arch St Suite 100
Philadelphia,PA191291191 		23-2979433 501c(3) 27,000       ADULT CARE
(61) Duke University Medical CenterOffice of Sponsored Programs
Durham,NC27710 		56-0532129 501c(3) 49,750       TRAINING
(62) Duke University Medical CenterOffice of Sponsored Programs
Box 104025
Durham,NC27710 		56-0532129 501c(3) 62,360       CF CARE CENTER
(63) East Tennessee Children's Hospital Association I2100 Clinch Avenue 310
Box 104025
Knoxville,TN37916 		62-6002604 501c(3) 68,260       CF CARE CENTER
(64) Eastern Maine Medical Center417 State Street
Bangor,ME04401 		01-0211501 501c(3) 29,960       CF CARE CENTER
(65) Emory University1380 South Oxford Road
Suite 305
Atlanta,GA30322 		58-0566256 501c(3) 185,600       CF CARE CENTER
(66) Emory University1380 South Oxford Road
Atlanta,GA30322 		58-0566256 501c(3) 27,000       QUALITY IMPROVEMENT
(67) Emory University1380 South Oxford Road
Atlanta,GA30322 		58-0566256 501c(3) 20,250       ADULT CARE
(68) Fairfax Neonatal Associates PC dbaPediatric Lung2730-B Prosperity Avenue
Fairfax,VA22031 		54-1110106 C Corp. 20,878       CF CARE CENTER
(69) Fletcher Allen Health Care111 Colchester Ave
Burlington,VT05401 		03-0219309 501c(3) 66,210       CF CARE CENTER
(70) Geisinger Medical CenterPediatric Allergy Immunology Pul
Danville,PA17822 		23-6291113 501c(3) 46,390       CF CARE CENTER
(71) Good Samaritan Hospital1000 Montauk Highway
100 N Academy Drive
New York,NY11795 		11-1888924 501c(3) 11,050       CF CARE CENTER
(72) Gundersen Lutheran Medical Foundation1900 South Avenue
La Crosse,WI54601 		39-1249705 501c(3) 13,500       CF CARE CENTER
(73) Hartford HospitalDepartment of Medicine
Hartford,CT06102 		06-0646668 501c(3) 30,441       CF CARE CENTER
(74) Henry M Jackson Foundation for the advancement of1404 Rockville Pike Suite 600
80 Seymour Street
Rockville,MD20852 		52-1317896 501c(3) 38,505       CF CARE CENTER
(75) Indiana University (Indianapolis)Indiana University Research and Spo
Indianapolis,IN462025167 		35-6001673 501c(3) 97,750       TRAINING
(76) Indiana University (Indianapolis)Indiana University Research and Spo
Indianapolis,IN462025167 		35-6001673 501c(3) 189,040       CF CARE CENTER
(77) Iowa Health Foundation1440 Ingersoll Avenue
Des Moines,IA50309 		42-1467682 501c(3) 42,680       CF CARE CENTER
(78) Kaiser Foundation Hospitals Center for Health Res3800 North Interstate Avenue
Portland,OR97227 		91-1105628 501c(3) 20,336       CF CARE CENTER
(79) Kaiser Foundation Research Institute1800 Harrison Street
OAKLAND,CA94612 		94-1105628 501c(3) 119,500       CF CARE CENTER
(80) Kaleida Health219 Bryant Street
16th floor
Buffalo,NY14209 		16-1533232 501c(3) 80,400       CF CARE CENTER
(81) Kosair Children's Hospital - CF CenterPO Box 35070
Louisville,KY402325070 		61-1028725 501c(3) 47,860       CF CARE CENTER
(82) Landon Pediatric Foundation3160 Loma Vista Road
Ventura,CA93003 		93-1097216 501c(3) 22,620       CF CARE CENTER
(83) Lee Memorial Health System Foundation Inc9800 S HealthPark Dr
Ft Myers,FL339083630 		65-0645343 501c(3) 23,320       CF CARE CENTER
(84) Loma Linda University Medical CenterColeman Pavilion
Loma Linda,CA92350 		33-0672915 501c(3) 47,530       CF CARE CENTER
(85) Long Island Jewish Medical CenterFinance Department
PO Box 2000
Westbury,NY11590 		11-2241326 501c(3) 29,788       CF CARE CENTER
(86) Loyola University of Chicago2160 S First Avenue
972 Brushhollow Road
Maywood,IL60153 		36-1408475 501c(3) 39,450       CF CARE CENTER
(87) LSUMC - ShreveportP O Box 33932
Shreveport,LA71130 		72-0702002 501c(3) 68,140       CF CARE CENTER
(88) Lutheran Hospital of Indiana7950 West Jefferson Boulevard
FT Wayne,IN46804 		35-1963748 LP 25,360       CF CARE CENTER
(89) Maine Medical Center22 Bramhall Street
Portland,ME04102 		01-0238552 501c(3) 76,590       CF CARE CENTER
(90) Marshfield Clinic Research Foundation1000 North Oak Avenue
Marshfield,WI54449 		39-0452970 501c(3) 12,008       CF CARE CENTER
(91) Mary Bridge Children's Foundation311 South L Street
Tacoma,WA98405 		94-3030039 501c(3) 33,290       CF CARE CENTER
(92) Medical College of GeorgiaPO box 945552
Mailstop B1-OC
Atlanta,GA303945552 		58-6002053 501c(3) 75,790       CF CARE CENTER
(93) Medical University of South CarolinaPO Box 997
Charleston,SC29402 		57-6000722 501c(3) 77,320       CF CARE CENTER
(94) Medical University of South CarolinaPO Box 997
Charleston,SC29402 		57-6000722 501c(3) 27,000       ADULT CARE
(95) Memorial Medical Center Foundation2801 Atlantic Avenue
Long Beach,CA90806 		95-6105984 501c(3) 80,790       CF CARE CENTER
(96) Memorial Medical Center Foundation2801 Atlantic Avenue
Long Beach,CA90806 		95-6105984 501c(3) 23,000       ADULT CARE
(97) Miami Children's HospitalMOB 203
Miami,FL33155 		59-0638499 501c(3) 26,580       CF CARE CENTER
(98) Michigan State University301 Administration Bldg
3200 SW 60th Court
East Lansing,MI488241046 		38-6005984 501c(3) 55,514       CF CARE CENTER
(99) Mission Healthcare Foundation Inc980 Hendersonville Road
Asheville,NC28803 		56-1881331 501c(3) 14,304       CF CARE CENTER
(100) Monmouth Medical Center Foundation300 Second Avenue
Suite C
Long Branch,NJ07740 		22-2456079 501c(3) 55,410       CF CARE CENTER
(101) Monmouth Medical Center Foundation300 Second Avenue
Long Branch,NJ07740 		22-2456079 501c(3) 27,000       ADULT CARE
(102) National Jewish Medical and Research Center1400 Jackson Street
Denver,CO80206 		74-2044647 501c(3) 84,960       CF CARE CENTER
(103) National Jewish Medical and Research Center1400 Jackson Street
Denver,CO80206 		74-2044647 501c(3) 91,000       RESEARCH
(104) North Suburban Pulmonary Research and Education8780 W Gold
Niles,IL60714 		36-4393617 C Corp. 8,000       CF CARE CENTER
(105) Northeastern University360 Huntington Avenue
Suite 102
Boston,MA02115 		04-1679980 501c(3) 45,800       RESEARCH
(106) Northwestern Medical Faculty FoundationFinancial Services
405 Lake Hall
Chicago,IL60611 		36-3097297 501c(3) 6,000       CF CARE CENTER
(107) Northwestern University750 N Lake Shore Drive
680 N Lake Shore Dr Suite 1118
Chicago,IL606113008 		36-2167817 501c(3) 27,000       ADULT CARE
(108) Norton Hospital IncPO Box 35070
Rubloff 7th Floor
Louisville,KY402325070 		61-0703799 501c(3) 27,130       CF CARE CENTER
(109) Oregon Health & Sciences University3181 SW Sam Jackson Park Road L-1
Portland,OR97201 		23-7083114 501c(3) 134,164       CF CARE CENTER
(110) Oregon Health & Sciences University3181 SW Sam Jackson Park Road L-1
Portland,OR97201 		23-7083114 501c(3) 25,289       QUALITY IMPROVEMENT
(111) Oregon Health & Sciences University3181 SW Sam Jackson Park Road L-1
Portland,OR97201 		23-7083114 501c(3) 42,500       RESEARCH
(112) Oregon Health & Sciences University3181 SW Sam Jackson Park Road L-1
Portland,OR97201 		23-7083114 501c(3) 97,200       RESEARCH STUDIES
(113) Oregon Health & Sciences University3181 SW Sam Jackson Park Road L-1
Portland,OR97201 		23-7083114 501c(3) 27,000       ADULT CARE
(114) Pennsylvania State UniversityCollege of Medicine
Hershey,PA17033 		24-6000376 501c(3) 103,470       CF CARE CENTER
(115) Phoenix Children's Hospital1300 North 12th Street
Office of Research Affairs H138
Phoenix,AZ85006 		86-0422559 501c(3) 123,640       CF CARE CENTER
(116) Providence Alaska Medical Center3200 Providence Drive
Anchorage,AK995196604 		92-0016429 501c(3) 24,840       CF CARE CENTER
(117) Providence Physician Service101 W 8th Ave
PO Box 196604
Spokane,WA99204 		91-1216033 C Corp. 56,760       CF CARE CENTER
(118) Regents of the University of ColoradoGrants Contracts
Aurora,CO800450508 		84-6000555 501c(3) 129,798       TRAINING
(119) Rhode Island Hospital593 Eddy Street
F428 Fitzsimons Building 500
Providence,RI02903 		05-0258954 501c(3) 53,110       CF CARE CENTER
(120) Rosalind Franklin University of Medicine and ScienGreen Bay Rd
North Chicago,IL60064 		36-2181973 501c(3) 197,387       RESEARCH STUDIES
(121) Rush-Presbyterian-St Luke's Medical Center1725 West Harrison Suite 718
Chicago,IL60612 		36-2174823 501c(3) 36,950       CF CARE CENTER
(122) Saint Barnabas Medical CenterPediatric Pulmonary Division
Livingston,NJ07039 		22-1494440 501c(3) 19,290       CF CARE CENTER
(123) Saint Francis Medical Center530 NE Glen Oak Avenue
200 S Orange Avenue
Peoria,IL61637 		37-0662569 501c(3) 47,970       CF CARE CENTER
(124) Saint Joseph's Hospital and Medical Center703 Main Street
Paterson,NJ07503 		22-1487602 501c(3) 16,410       CF CARE CENTER
(125) Samaritan Medical CenterChild Adolescent Health Services
Watertown,NY13601 		15-0533577 501c(3) 7,120       CF CARE CENTER
(126) Sanford Children's Specialty Clinic1305 W 18th Street
513 Washington Street
Sioux Falls,SD571175039 		46-0447693 501c(3) 56,010       CF CARE CENTER
(127) South Broward Hospital DistrictJoe DiMaggios Childrens Hospital
Hollywood,FL33321 		59-6014973 501c(3) 42,800       CF CARE CENTER
(128) Spectrum HealthDowntown Campus
Cystic Fibrosis Clinic
Grand Rapids,MI49503 		38-2752328 501c(3) 99,490       CF CARE CENTER
(129) St Alexius Medical CenterPO Box 1658
100 Michigan Street NE
Bismarck,ND58502 		45-0226711 501c(3) 30,040       CF CARE CENTER
(130) St Joseph's Regional Medical Center720 East Cedar Street
South Bend,IN46617 		35-1568821 501c(3) 20,910       CF CARE CENTER
(131) St Louis University3500 Lindell Blvd
Suite 440
St Louis,MO63103 		43-0654872 501c(3) 76,786       CF CARE CENTER
(132) St Luke's Regional Medical Center100 East Idaho
Boise,ID83712 		82-0161600 501c(3) 38,950       CF CARE CENTER
(133) Stanford University651 Serra Street Suite 220
Suite 200
Stanford,CA943056215 		94-1156365 501c(3) 52,250       TRAINING
(134) Stanford University651 Serra Street Suite 220
Mail Code 5402
Stanford,CA943056215 		94-1156365 501c(3) 122,060       CF CARE CENTER
(135) Stanford University651 Serra Street Suite 220
Mail Code 5402
Stanford,CA943056215 		94-1156365 501c(3) 97,200       RESEARCH STUDIES
(136) Stanford University651 Serra Street Suite 220
Mail Code 5402
Stanford,CA943056215 		94-1156365 501c(3) 27,000       ADULT CARE
(137) Sutter Medical Center Sacramento5609 J Street Suite C
Mail Code 5402
Sacramento,CA95819 		94-1156621 501c(3) 47,260       CF CARE CENTER
(138) TC Thompson Children's Hospital910 Blackford Street
Chattanooga,TN37403 		62-6000101 501c(3) 28,170       CF CARE CENTER
(139) Tenet St Mary's Inc Cystic Fibrosis CenterPO Box 24620
West Palm Beach,FL33407 		75-2932830 C Corp. 36,980       CF CARE CENTER
(140) The Children's Hospital Association13123 East 16th Avenue B321
901 45th Street
Aurora,CO80045 		84-0166760 501c(3) 188,740       CF CARE CENTER
(141) The Children's Hospital at Scott & White2401 South 31st Street
Temple,TX76508 		74-1166904 501c(3) 13,000       CF CARE CENTER
(142) The Children's Hospital of Philadelphia3516 Civic Center Blvd
Philadelphia,PA191044318 		23-1352166 501c(3) 78,748       CF CARE CENTER
(143) The Curators of the University of MissouriOffice of Sponsored Program Adminis
Columbia,MO65211 		43-6003859 501c(3) 57,604       CF CARE CENTER
(144) The Curators of the University of MissouriOffice of Sponsored Program Adminis
310 Jesse Hall
Columbia,MO65211 		43-6003859 501c(3) 43,600       RESEARCH
(145) The Curators of the University of MissouriOffice of Sponsored Program Adminis
310 Jesse Hall
Columbia,MO65211 		43-6003859 501c(3) 27,000       ADULT CARE
(146) The Feinstein Institute for Medical Research350 Community Drive
310 Jesse Hall
Manhasset,NY11030 		11-2673595 501c(3) 27,000       QUALITY IMPROVEMENT
(147) The General Hospital Corporation (aka MassachusResearch Management
Boston,MA021142554 		04-2697983 501c(3) 166,971       TRAINING
(148) The General Hospital Corporation (aka MassachusResearch Management
50 Staniford Street Suite 1001
Boston,MA021142554 		04-2697983 501c(3) 88,380       CF CARE CENTER
(149) The Hitchcock FoundationOne Medical Center Drive
50 Staniford Street Suite 1001
Lebanon,NH03756 		02-0222139 501c(3) 85,430       CF CARE CENTER
(150) The Johns Hopkins University600 N Wolfe Street Park 316
Baltimore,MD21205 		52-0595110 501c(3) 197,550       CF CARE CENTER
(151) The Johns Hopkins University600 N Wolfe Street Park 316
Baltimore,MD21205 		52-0595110 501c(3) 89,750       RESEARCH
(152) The Johns Hopkins University600 N Wolfe Street Park 316
Baltimore,MD21205 		52-0595110 501c(3) 414,000       RESEARCH CENTERS
(153) The Medical College of Wisconsin8701 Watertown Plk Rd
Milwaukee,WI53226 		39-0806261 501c(3) 125,230       CF CARE CENTER
(154) The Ohio State University Research Foundation1960 Kenny Road
Columbus,OH432101063 		31-6401599 501c(3) 97,200       RESEARCH STUDIES
(155) The President and Fellows of Harvard CollegeHolyoke Center Suite 600
Cambridge,MA02138 		04-2103580 501c(3) 45,800       RESEARCH
(156) The Rector and Visitors of the University of VirgiPO Box 400195
1350 Massachusetts Ave
Charlottesville,VA22904 		54-6001796 501c(3) 108,492       CF CARE CENTER
(157) The Rector and Visitors of the University of VirgiPO Box 400195
Charlottesville,VA22904 		54-6001796 501c(3) 42,500       RESEARCH
(158) The Rector and Visitors of the University of VirgiPO Box 400195
Charlottesville,VA22904 		54-6001796 501c(3) 182,112       RESEARCH STUDIES
(159) The Regents of the University of California DavisCashiers Office 1200 Dutton Hall
Davis,CA95616 		95-6036494 501c(3) 67,118       CF CARE CENTER
(160) The Regents of the University of California DavisCashiers Office 1200 Dutton Hall
One Shields Avenue
Davis,CA95616 		95-6036494 501c(3) 25,388       ADULT CARE
(161) 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
(162) 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) 101,592       CF CARE CENTER
(163) The Regents of the University of California San DOffice of Post Award Financial Serv
9500 Gilman Drive 0954
La Jolla,CA920930954 		95-6006144 501c(3) 27,000       ADULT CARE
(164) The Regents of the University of California San FUCSF Office of Sponsored Research
9500 Gilman Drive 0954
San Francisco,CA941430962 		94-6036493 501c(3) 48,000       TRAINING
(165) 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) 71,080       CF CARE CENTER
(166) 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) 414,000       RESEARCH CENTERS
(167) 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
(168) The Regents of the University of Michigan3003 South State Street Room 3089
3333 California Street Suite 315
Ann Arbor,MI481091274 		38-6006309 501c(3) 189,200       CF CARE CENTER
(169) The Regents of the University of MinnesotaSponsored Projects Administration
Minneapolis,MN554552070 		41-6007513 501c(3) 49,197       TRAINING
(170) The Regents of the University of MinnesotaSponsored Projects Administration
200 Oak St SE
Minneapolis,MN554552070 		41-6007513 501c(3) 296,640       CF CARE CENTER
(171) The Research Institute at Nationwide Children's HHuntington National Bank
200 Oak St SE
Columbus,OH43260 		31-6056230 501c(3) 182,140       CF CARE CENTER
(172) The Research Foundation of SUNYP O Box 9
Dept 4656 / Ref 413407
Albany,NY122010009 		14-1368361 501c(3) 122,950       CF CARE CENTER
(173) The Research Foundation of SUNYP O Box 9
Albany,NY122010009 		14-1368361 501c(3) 27,000       ADULT CARE
(174) The Tampa General Hospital FoundationPO Box 1289
Tampa,FL33601 		23-7354477 501c(3) 48,910       CF CARE CENTER
(175) The Trustees of Columbia University in the City of351 Engineering Terrace
New York,NY10027 		13-5598093 501c(3) 49,750       TRAINING
(176) The Trustees of Columbia University in the City of351 Engineering Terrace
New York,NY10027 		13-5598093 501c(3) 119,050       CF CARE CENTER
(177) The University of Alabama at BirminghamAB 990
Birmingham,AL352940109 		63-6005396 501c(3) 49,662       TRAINING
(178) The University of Alabama at BirminghamAB 990
1530 3rd Avenue S
Birmingham,AL352940109 		63-6005396 501c(3) 150,950       CF CARE CENTER
(179) The University of Alabama at BirminghamAB 990
1530 3rd Avenue S
Birmingham,AL352940109 		63-6005396 501c(3) 27,000       QUALITY IMPROVEMENT
(180) The University of Alabama at BirminghamAB 990
1530 3rd Avenue S
Birmingham,AL352940109 		63-6005396 501c(3) 414,000       RESEARCH CENTERS
(181) The University of Chicago5801 S Ellis Avenue
1530 3rd Avenue S
Chicago,IL60637 		36-2177139 501c(3) 50,550       CF CARE CENTER
(182) The University of North Carolina at Chapel HillNorth Carolina State Treasurer
Chapel Hill,NC275991350 		56-6001393 501c(3) 236,094       CF CARE CENTER
(183) The University of North Carolina at Chapel HillNorth Carolina State Treasurer
300 Bynum Hall
Chapel Hill,NC275991350 		56-6001393 501c(3) 27,000       QUALITY IMPROVEMENT
(184) The University of North Carolina at Chapel HillNorth Carolina State Treasurer
300 Bynum Hall
Chapel Hill,NC275991350 		56-6001393 501c(3) 87,956       RESEARCH
(185) The University of North Carolina at Chapel HillNorth Carolina State Treasurer
300 Bynum Hall
Chapel Hill,NC275991350 		56-6001393 501c(3) 86,073       PILOT STUDIES
(186) The University of North Carolina at Chapel HillNorth Carolina State Treasurer
300 Bynum Hall
Chapel Hill,NC275991350 		56-6001393 501c(3) 486,000       RESEARCH CENTERS
(187) The University of Vermont and State Agricultural C85 So Prospect Street
300 Bynum Hall
Burlington,VT054050160 		03-0179440 501c(3) 68,250       TRAINING
(188) Toledo Children's Hospital2142 N Cove Blvd
Toledo,OH43606 		34-4428256 501c(3) 76,040       CF CARE CENTER
(189) Trustees of Boston University881 Commonwealth Avenue
Boston,MA02215 		04-2103547 501c(3) 43,200       PILOT STUDIES
(190) Trustees of Dartmouth College11 Rope Ferry Road 6210
Hanover,NH037551404 		02-0222111 501c(3) 183,825       QUALITY IMPROVEMENT
(191) Trustees of Dartmouth College11 Rope Ferry Road 6210
Hanover,NH037551404 		02-0222111 501c(3) 97,200       RESEARCH STUDIES
(192) Trustees of Dartmouth College11 Rope Ferry Road 6210
Hanover,NH037551404 		02-0222111 501c(3) 43,072       PILOT STUDIES
(193) Trustees of Dartmouth College11 Rope Ferry Road 6210
Hanover,NH037551404 		02-0222111 501c(3) 340,347       RESEARCH CENTERS
(194) Tulane University Medical School6401 Freret St
New Orleans,LA70118 		72-0423889 501c(3) 85,460       CF CARE CENTER
(195) UMDNJ- Robert Wood Johnson Medical SchoolUMDNJ
New Brunswick,NJ08903 		22-1775306 501c(3) 61,860       CF CARE CENTER
(196) UMDNJ- Robert Wood Johnson Medical SchoolUMDNJ
1 Robert Wood Johnson Place
New Brunswick,NJ08903 		22-1775306 501c(3) 27,000       ADULT CARE
(197) University Hospitals of Cleveland2074 Abingdon Road
1 Robert Wood Johnson Place
Cleveland,OH44106 		34-0714775 501c(3) 154,980       CF CARE CENTER
(198) University Internal Medicine Associates IncCardio-Pulmonary Research Center
Cincinnati,OH45326 		31-0896517 501c(3) 46,340       CF CARE CENTER
(199) University of Arkansas for Medical Sciences4301 West Markham Street
PO Box 670564
Little Rock,AR72205 		71-6046242 501c(3) 38,010       CF CARE CENTER
(200) University of Arkansas for Medical Sciences4301 West Markham Street
Mail Slot 555
Little Rock,AR72205 		71-6046242 501c(3) 27,000       ADULT CARE
(201) University of Cincinnati560 University Hall
Mail Slot 555
Cincinnati,OH45221 		31-6000989 501c(3) 99,500       TRAINING
(202) University of FloridaPO Box 115500
Sponsored Programs Accounting Dept
Gainesville,FL32611 		59-6002052 501c(3) 85,050       CF CARE CENTER
(203) University of IowaOffice of Vice President for Resear
Iowa City,IA52242 		42-6004813 501c(3) 115,080       CF CARE CENTER
(204) University of IowaOffice of Vice President for Resear
Division of Sponsored Programs
Iowa City,IA52242 		42-6004813 501c(3) 27,000       QUALITY IMPROVEMENT
(205) University of IowaOffice of Vice President for Resear
Division of Sponsored Programs
Iowa City,IA52242 		42-6004813 501c(3) 68,250       TRAINING
(206) University of IowaOffice of Vice President for Resear
Division of Sponsored Programs
Iowa City,IA52242 		42-6004813 501c(3) 91,300       RESEARCH
(207) University of IowaOffice of Vice President for Resear
Division of Sponsored Programs
Iowa City,IA52242 		42-6004813 501c(3) 93,829       RESEARCH STUDIES
(208) University of IowaOffice of Vice President for Resear
Division of Sponsored Programs
Iowa City,IA52242 		42-6004813 501c(3) 450,000       RESEARCH CENTERS
(209) University of Kansas Medical Center Research Insti3901 Rainbow Boulevard
Division of Sponsored Programs
Kansas City,KS661607702 		48-1108830 501c(3) 51,390       CF CARE CENTER
(210) University of Kentucky Research FoundationKentucky CF Clinic J424
Lexington,KY405360284 		61-6033693 501c(3) 99,160       CF CARE CENTER
(211) University of Massachusetts Medical Center55 Lake Avenue
740 South Limestone
Worcester,MA10655 		04-3167352 501c(3) 51,790       CF CARE CENTER
(212) University of MiamiPediatric/Pulmonary Division
Miami,FL33137 		59-0624458 501c(3) 51,290       CF CARE CENTER
(213) University of MiamiPediatric/Pulmonary Division
1601 NW 12th Avenue
Miami,FL33137 		59-0624458 501c(3) 49,646       ADULT CARE
(214) University of Mississippi Medical Center2500 North State Street
1601 NW 12th Avenue
Jackson,MS392164505 		64-6008520 501c(3) 51,630       CF CARE CENTER
(215) University of Nebraska Medical CenterService Building
Omaha,NE681987835 		47-0049123 501c(3) 125,210       CF CARE CENTER
(216) University of Nebraska Medical CenterService Building
985100 Nebraska Medical Center
Omaha,NE681987835 		47-0049123 501c(3) 5,400       QUALITY IMPROVEMENT
(217) University of New Mexico Health Sciences CenterControllers Office
985100 Nebraska Medical Center
Albuquerque,NM871315041 		85-6000642 501c(3) 46,862       CF CARE CENTER
(218) University of Oklahoma Health Sciences CenterPO Box 26901
Health Sciences and Services Bldg
Oklahoma City,OK73190 		73-6017987 501c(3) 104,740       CF CARE CENTER
(219) University of Pittsburgh350 Thackeray Hall
Pittsburgh,PA15260 		25-0965591 501c(3) 5,400       QUALITY IMPROVEMENT
(220) University of Pittsburgh350 Thackeray Hall
Pittsburgh,PA15260 		25-0965591 501c(3) 128,600       RESEARCH
(221) University of Pittsburgh350 Thackeray Hall
Pittsburgh,PA15260 		25-0965591 501c(3) 450,000       RESEARCH CENTERS
(222) University of Pittsburgh350 Thackeray Hall
Pittsburgh,PA15260 		25-0965591 501c(3) 27,000       ADULT CARE
(223) University of Rochester1325 Mt Hope Avenue
Rochester,NY14642 		16-0743209 501c(3) 78,910       CF CARE CENTER
(224) University of Rochester1325 Mt Hope Avenue
Suite 260
Rochester,NY14642 		16-0743209 501c(3) 27,000       ADULT CARE
(225) University of South AlabamaAdmin Bldg 362
Suite 260
Mobile,AL36688 		63-0477348 501c(3) 34,750       CF CARE CENTER
(226) University of South Carolina Research Foundation901 Sumter Street
Columbia,SC29208 		57-0967350 501c(3) 31,941       CF CARE CENTER
(227) University of South FloridaDepartment of Pediatrics
Suite 501
Tampa,FL33606 		59-3102112 501c(3) 22,520       CF CARE CENTER
(228) University of Southern CaliforniaUSC Contracts and Grants
17 Davis Boulevard Suite 200
Los Angeles,CA900339002 		95-1642394 501c(3) 42,777       CF CARE CENTER
(229) University of Southern CaliforniaUSC Contracts and Grants
1540 Alcazar Street
Los Angeles,CA900339002 		95-1642394 501c(3) 54,000       ADULT CARE
(230) University of Tennessee62 S Dunlap
1540 Alcazar Street
Memphis,TN38163 		62-6001636 501c(3) 61,210       CF CARE CENTER
(231) University of Texas Health Center at Tyler11937 US Hwy 271
Tyler,TX75708 		75-6001354 501c(3) 18,000       CF CARE CENTER
(232) University of Utah406 Park Bldg
Salt Lake City,UT84112 		87-6000525 501c(3) 175,550       CF CARE CENTER
(233) University of WashingtonGrant Contract Accounting
Seattle,WA981056692 		91-6001537 501c(3) 74,930       CF CARE CENTER
(234) University of WashingtonGrant Contract Accounting
3917 University Way NE
Seattle,WA981056692 		91-6001537 501c(3) 97,200       RESEARCH STUDIES
(235) University of WashingtonGrant Contract Accounting
3917 University Way NE
Seattle,WA981056692 		91-6001537 501c(3) 378,000       RESEARCH CENTERS
(236) University of Wisconsin Board of Regents750 University Avenue
3917 University Way NE
Madison,WI53706 		39-6006492 501c(3) 48,000       TRAINING
(237) University of Wisconsin Board of Regents750 University Avenue
Madison,WI53706 		39-6006492 501c(3) 138,462       CF CARE CENTER
(238) UT Southwestern Medical Center at Dallas5323 Harry Hines Blvd
Dallas,TX753909040 		75-6002868 501c(3) 144,220       CF CARE CENTER
(239) UT Southwestern Medical Center at Dallas5323 Harry Hines Blvd
Dallas,TX753909040 		75-6002868 501c(3) 92,882       RESEARCH STUDIES
(240) Vanderbilt University Medical CenterPO Box 30195
Nashville,TN372410195 		62-0476822 501c(3) 153,980       CF CARE CENTER
(241) Via Christi Regional Medical Center CF Clinic3311 East Murdock Street
Wichita,KS67218 		48-1172106 501c(3) 55,120       CF CARE CENTER
(242) Virginia Commonwealth UniversityBox 2506 - VCU Station
Richmond,VA232842506 		54-6001758 501c(3) 59,940       CF CARE CENTER
(243) Wake Forest University Health SciencesMedical Center Blvd
WinstonSalem,NC271571064 		22-3849199 501c(3) 53,275       CF CARE CENTER
(244) Washington UniversityCampus Box 1034
St Louis,MO631121408 		43-0653611 501c(3) 210,095       CF CARE CENTER
(245) Wayne State UniversityGrants Contracts Office III
700 Rosedale Avenue
Detroit,MI48201 		38-6028425 501c(3) 40,790       CF CARE CENTER
(246) Weill Medical College of Cornell UniversityWhitney Pavillion Rm W-706
Research and Sponsored Programs
New York,NY10021 		15-0532082 501c(3) 43,600       RESEARCH
(247) West Virginia University Research CorporationWest Virginia University
1300 York Avenue Box 62
Morgantown,WV265066001 		55-0665758 501c(3) 56,160       CF CARE CENTER
(248) Wright State University School of MedicineOne Childrens Plaza
PO Box 6001
Dayton,OH45404 		31-0732831 501c(3) 27,000       ADULT CARE
(249) Yale UniversityCashier Office of the Asst Treasu
New Haven,CT065208231 		06-0646973 501c(3) 62,000       CF CARE CENTER
(250) Yale UniversityCashier Office of the Asst Treasu
PO Box 208231
New Haven,CT065208231 		06-0646973 501c(3) 68,250       TRAINING
(251) Yale UniversityCashier Office of the Asst Treasu
PO Box 208231
New Haven,CT065208231 		06-0646973 501c(3) 43,200       PILOT STUDIES
2
Enter total number of section 501(c)(3) and government organizations ......................... Bullet Image
165
3
Enter total number of other organizations ................................ . Bullet Image
10
For Privacy Act and Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50055P
Schedule I (Form 990) 2010

Schedule I (Form 990) 2010
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 696 596,723      













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 PROGREYS 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 PROGRESS REPORTS. SCIENTIFIC REPORTS ARE REVIEWED AND APPROVED BY THE ORGANIZATION'S SCIENTIFIC STAFF TO DETERMINE PROGRESS. REPORTS OF EXPENDITURES ARE REVIEWED AND APPROVED 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) 2010


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
2010
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 orprovision 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.
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 Regs. 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) 2010

Schedule J (Form 990) 2010
Page 2
Part II
Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees. Use Schedule J-1 if additional space 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) must equal the applicable column (D) or column (E) amounts on Form 990, Part VII, line 1a.
(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 in prior
Form 990 or
Form 990-EZ
(i) Base compensation (ii) Bonus & incentive compensation (iii) Other reportable compensation
(1) C Richard Mattingly (i)
(ii)		 345,800
0 		62,006
0 		19,465
0 		149,016
0 		23,413
0 		599,700
0 		62,006
0
(2) Robert J Beall PhD (i)
(ii)		 323,652
164,014 		54,003
26,599 		25,439
7,935 		154,438
63,690 		21,278
0 		578,810
262,238 		54,003
26,599
(3) Preston W Campbell MD (i)
(ii)		 222,712
115,272 		41,046
20,217 		15,218
5,445 		95,170
34,498 		28,230
0 		402,376
175,432 		41,046
20,217
(4) Vera H Twigg (i)
(ii)		 237,095
0 		25,969
0 		10,743
0 		54,772
0 		27,597
0 		356,176
0 		25,969
0
(5) Daniel Klein (i)
(ii)		 200,635
0 		0
0 		1,844
0 		20,164
0 		3,000
0 		225,643
0 		0
0
(6) Ann Palmer (i)
(ii)		 197,800
0 		0
0 		1,814
0 		19,835
0 		14,728
0 		234,177
0 		0
0
(7) David McLoughlin (i)
(ii)		 208,167
0 		0
0 		686
0 		21,587
0 		24,230
0 		254,670
0 		0
0
(8) Gregory August (i)
(ii)		 179,592
0 		0
0 		386
0 		18,038
0 		23,230
0 		221,246
0 		0
0
(9) Glen Goldmark (i)
(ii)		 174,685
0 		0
0 		1,597
0 		17,302
0 		17,028
0 		210,612
0 		0
0
(10) Amy DeMaria (i)
(ii)		 175,629
0 		0
0 		365
0 		16,952
0 		7,752
0 		200,698
0 		0
0
(11) Maureen Fraser (i)
(ii)		 162,305
0 		0
0 		1,460
0 		15,727
0 		16,815
0 		196,307
0 		0
0





Schedule J (Form 990) 2010

Schedule J (Form 990) 2010
Page 3
Part III
Supplemental Information
Complete this part to provide the information, explanation, or descriptions required for Part I, lines 1a, 1b, 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 - $308,912, 401(k) bonus - $14,740; (B)(ii) Bonus & Incentive Compensation: long-term incentive plan payment, which was previously reported (1) - $54,003; (B)(iii) Other Reportable Compensation: health insurance benefit - $2,912, automobile allowance - $4,824, other benefits including taxable general organization group term life insurance premiums - $17,703; (C) Deferred Compensation: retirement benefit (2) - $25,128, long-term incentive plan benefits (6) - $63,650, SERP (3) - $65,660; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $11,932, employee contribution to flexible spending account benefit - $5,000, 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 - $156,754, 401(k) bonus - $7,260; (B)(ii) Bonus & Incentive Compensation: long-term incentive plan payment, which was previously reported (1) - $26,599; (B)(iii) Other Reportable Compensation: health insurance benefit - $1,434, automobile allowance - $2,376, other benefits including general organization group term life insurance premiums - $4,125; (C) Deferred Compensation: long-term incentive plan benefits (6) - $31,350, SERP (3) - $32,340; (D) Nontaxable Benefits: $0 Cystic Fibrosis Foundation - Headquarters. (A) Name: P. Campbell, M.D.; (B)(i) Base Compensation: base salary - $222,712; (B)(ii) Bonus & Incentive Compensation: long-term incentive plan payment, which was previously reported (1) - $41,046; (B)(iii) Other Reportable Compensation: other benefits including taxable general organization group term life insurance premiums - $4,163, Section 457(b) Plan (5) - $11,055; (C) Deferred Compensation: retirement benefit (2) - $25,128, long-term incentive plan benefits (6) - $46,855, SERP (4) - $23,187; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $16,905, 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 - $115,272; (B)(ii) Bonus & Incentive Compensation: long-term incentive plan payment, which was previously reported (1) - $20,217; (B)(iii) Other Reportable Compensation: Section 457(b) Plan (5) - $5,445; (C) Deferred Compensation: long-term incentive plan benefit (6) - $23,077, SERP (4) - $11,421; (D) Nontaxable Benefits: $0 Cystic Fibrosis Foundation - Headquarters. Name: (A) R. Mattingly; (B)(i) Base Compensation: base salary - $345,800; (B)(ii) Bonus & Incentive Compensation: long-term incentive plan payment, which was previously reported (1) - $62,006; (B)(iii) Other Reportable Compensation: Section 457(b) Plan (5) - $16,500; other benefits including taxable general organization group term life insurance premiums - $2,965; (C) Deferred Compensation: retirement benefit (2) - $25,128, long-term incentive plan benefit (6) - $70,780, SERP (4) - $53,108; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $15,273, employee contribution to flexible spending account benefit - $2,500, employee contribution to general organization health plan benefit - $5,640 Cystic Fibrosis Foundation - Headquarters. (A) Name: V. Twigg; (B)(i) Base Compensation: base salary - $237,095; (B)(ii) Bonus & Incentive Compensation: long-term incentive plan payment, which was previously reported (1)- $25,969; (B)(iii) Other Reportable Compensation: taxable general organization group term life insurance premiums - $1,368, Section 457(b) Plan (5) - $9,375; (C) Deferred Compensation: retirement benefit (2) - $25,128, long-term incentive plan benefit (6) - $29,644; (D) Nontaxable Benefits: employer contribution to general organization health plan benefit - $17,908, employee contribution to flexible spending account benefit - $5,000, employee contribution to general organization health plan benefit - $4,689 (1) This figure represents payment of an award that accrued over a three-year performance period (years 2007-2009), and which was based on achievement of long term performance standards established in advance by the Compensation Committee of the Board. As required, this award was reported as "Deferred Compensation" on prior years' Forms 990 in each year it accrued and therefore (as required by the instructions) is double-reported here. (2) This is the employer contribution made under the Cystic Fibrosis Foundation 401(k) Plan for the 2010 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. 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. 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 related to a 3-year performance period, which ends on 12/31/12, based on achievement of performance objectives established in advance by the Compensation Committee of the Board. The individual must be employed on 12/31/12 to be eligible to receive full payment of the award. As required by the Form 990 instructions, this reported amount is an estimate of the portion of the award that accrued under the Plan by the executive for performance in 2010 but it has not been earned, awarded or paid under the Plan.
Schedule J (Form 990) 2010

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
2010
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 (PAGE 2 CORE FORM) 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. Consists of programs designed to help the general public and cystic fibrosis families in the detection of the disease by providing a referral service and handling inquiries concerning patients. Approximately 25,000 patients were served in 2010, including approximately 911 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 2010 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 package to compensation packages paid by similarly situated organizations for functionally comparable positions. (5) Documents, concurrently with its determination, the basis for its determination in the minutes of its meeting. These minutes are reviewed, revised if necessary and approved at the following meeting of the Committee. (6) Obtains a written legal opinion concerning the Committee's compliance with the IRS intermediate sanctions rules. The process described above was used 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 The process was last undertaken in 2009.
PUBLIC INSPECTION PART VI, SECTION C, LINE 19 (PAGE 6 CORE FORM) Forms 1023 and 990-T for the Organization are available on its website, CFF.org. The Organization's website provides a link to Guidestar.org for access to Form 990. The Foundation's governing documents (Bylaws and Articles of Incorporation) are 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 is also available on the Foundation's website, www.cff.org. The Board and Officer Conflict of Interest Policy and the audited financial statements are available on the Foundation's website, www.cff.org.
OTHER CHANGE IN NET ASSETS FORM 990, PART XI, LINE 5 UNREALIZED GAIN ON INVESTMENTS = 5,228,703 CHANGE IN EQUITY IN SUBSIDIARY (CFS) = -9,502,034 ----------- TOTAL CHANGES IN NET ASSETS -4,273,331
ACCOUNTS IN FOREIGN COUNTRIES FORM 990, PART V, LINE 4B THE FINANCIAL ACCOUNTS IN FOREIGN COUNTRIES THAT THE ORGANIZATION HAS AN INTEREST IN WERE SHARES INVESTMENT MUTUAL FUNDS.
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) 2010

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
2010
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 20,090,267 14,982,238 NA
 
(2) cystic fibrosis patient assistance fdn
6931 arlington rd
bethesda,MD20814
90-0350985 		patient asst DE 142,728 1,672,655 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
 
 
 
(2) CYSTIC FIBROSIS FOUNDATION GROUP

6931 ARLINGTON RD

BETHESDA,MD20814
13-6161105 		EDUCATION DE 501(C)(3) 7 cfF-hq
 
 
 










For Privacy Act and Paperwork Reduction Act Notice, see the Instructions for Form 990.
Cat. No. 50135Y
Schedule R (Form 990) 2010
Schedule R (Form 990) 2010
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 13,585,954 27,829,457 100.000 %












Schedule R (Form 990) 2010
Schedule R (Form 990) 2010
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 other organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1b
 
No
c Gift, grant, or capital contribution from other organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1c
Yes
 
d Loans or loan guarantees to or for other organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1d
Yes
 
e Loans or loan guarantees by other organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1e
 
No
f Sale of assets to other organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1f
 
No
g Purchase of assets from other organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1g
 
No
h Exchange of assets . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1h
 
No
i Lease of facilities, equipment, or other assets to other organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1i
 
No
j Lease of facilities, equipment, or other assets from other organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . .
1j
 
No
k Performance of services or membership or fundraising solicitations for other organization(s) . . . . . . . . . . . . . . . . . . . . . .
1k
Yes
 
l Performance of services or membership or fundraising solicitations by other organization(s) . . . . . . . . . . . . . . . . . . . . . .
1l
 
No
m Sharing of facilities, equipment, mailing lists, or other assets . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1m
Yes
 
n Sharing of paid employees . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1n
Yes
 
o Reimbursement paid to other organization for expenses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1o
 
No
p Reimbursement paid by other organization for expenses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1p
 
No
q Other transfer of cash or property to other organization(s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1q
 
No
r Other transfer of cash or property from other 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 foundation therapeutics

 C 11,352,615  
(2) CYSTIC FIBROSIS FOUNDATION GROUP

 C 79,522,503  
(3) CYSTIC FIBROSIS FOUNDATION THERAPEUTICS

 M 242,526  
(4) CYSTIC FIBROSIS FOUNDATION THERAPEUTICS

 N 1,684,291  
(5) CYSTIC FIBROSIS SERVICES INC

 D 10,000,000  
(6) CYSTIC FIBROSIS SERVICES INC

 A(I) 57,404  
(7) CYSTIC FIBROSIS SERVICES INC

 K 7,344,991  
(8) CYSTIC FIBROSIS SERVICES INC

 R 10,874,249  
(9) CYSTIC FIBROSIS SERVICES INC

 B 7,200,940  
Schedule R (Form 990) 2010
Schedule R (Form 990) 2010
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)
Are all
partners
section
501(c)(3)
organizations? 		(e)
Share of
end-of-year
assets 		(f)
Disproprtionate allocations? 		(g)
Code V—UBI
amount in box
20 of Schedule K-1
(Form 1065) 		(h)
General or
managing
partner?
Yes No Yes No Yes No






























Schedule R (Form 990) 2010
Schedule R (Form 990) 2010
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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