Cystic Fibrosis Foundation meets the 20 Standards for Charity Accountability.
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Year, State Incorporated
1955, DE
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Stated Purpose
"to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high quality, specialized care."
Cystic Fibrosis Foundation (CFF) funds CF and report almost all drugs used to treat CF were possible, in part, due to CFF support. CFF?s research efforts include a dedicated CFF Therapeutics Lab, which conducts CF research to advance new therapies.
CFF also maintains a Patient Registry, collecting information on the health status of people with CF in the U.S. to inform and improve research and care. The organization reports that it has more than 70 chapter offices and funds and accredits more than 120 care centers nationwide to provide specialized care to people with CF. It also advocates for programs and policies at the local, state, and federal levels that help advance research and drug development, improve access to CF care, and raise awareness about the disease. CFF?s Compass program helps people with CF, their families, and their care teams with insurance, financial, legal, and other issues. The Foundation also organizes programs to listen to, support, and partner with the CF community. CFF also educates and raises awareness of cystic fibrosis through content on its website, publications, video, and social media.
For the year ended December 31, 2019, Cystic Fibrosis Foundation's program expenses were:
Medical programs |
$245,607,343 |
Community services |
$22,103,810 |
Public and professional information and education |
$17,584,009 |
Total Program Expenses: |
$285,295,162 |
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Chief Executive
Michael P. Boyle, M.D., President and CEO
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Compensation*
$567,724
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Chair of the Board
Catherine McLoud
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Chair's Profession / Business Affiliation
Hospitality Industry Consultant
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Board Size
16
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Paid Staff Size
744
*2018 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Invitations to fund raising events, Planned giving arrangements, Cause- related marketing (affinity credit cards, consumer product sales, etc.)
Cystic Fibrosis Foundation incurred joint costs of $1,716,518 for informational materials and activities that included fund raising materials. Of those costs $1,289,184 wa allocated to fundraising expenses and $427,334 was allocated to program expenses.
Fundraising costs were 26% of related contributions. (Related contributions, which totaled $109,021,085, are donations received as a result of fundraising activities.)
This organization is tax-exempt under section 501(c) (3) of the Internal Revenue Code.It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.
The following information is based on Cystic Fibrosis Foundation's audited financial statements for the year ended December 31, 2019.
Source of Funds |
Net special event revenue, net |
$80,434,818 |
Other income |
$55,976,109 |
General contributions |
$28,586,267 |
Total Income |
$164,997,194 |
- Programs: 84%
- Fundraising: 9%
- Administrative: 7%
Total Income |
$164,997,194 |
Program expenses |
$285,295,162 |
Fundraising expenses |
$28,709,962 |
Administrative expenses |
$25,897,119 |
Other expenses |
$0 |
Total expenses: |
$339,902,243 |
Income in Excess of Expenses |
$-174,905,049 |
Beginning Net Assets |
$3,775,363,472 |
Other Changes In Net Assets |
$636,250,409 |
Ending Net Assets |
$4,236,708,832 |
Total Liabilities |
$239,802,250 |
Total Assets |
$4,476,511,082 |
Note 1: In the above financial section, "other changes in net assets" represents net nonoperating investment income.
Note 2: For the year ended December 31, 2019, CFF reported in-kind incoem of $10,918,240 including auction items ($9,719,508), securities ($1,168,733), and cars and other vehicles ($29,999).