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Cystic Fibrosis Foundation

CharityWatch report issued
January 2024

CharityWatch Grade
This rating has been downgraded from B due to the charity having 11.1 years worth of available assets in reserve.
Program Percentage
Amount spent on programs
relative to overhead.
Cost to Raise $100
Amount spent to raise
$100 of contributions.

Large Asset Reserves

CharityWatch reduces the grade of any charity that has available assets equal to three to five years of operating expenses. Charities with "years of available assets" of more than five years receive an "F" grade regardless of other measurements. In CharityWatch's view, a reserve of less than three years is reasonable and does not affect a charity's grade. These reductions in grades are based solely on the charities' asset reserves as compared to budget. The CharityWatch definition of "years of available assets" includes funds currently available for the charity's use, including investments that the charity has set aside as a reserve but could choose to spend if it wanted to do so. Cystic Fibrosis Foundation's letter grade rating has been downgraded because it has 3 or more years of available assets.

See Our Process to learn more about how CharityWatch considers a charity’s asset reserves and the High Asset List for a list of charities whose ratings have been reduced due to high assets.

Contact Information

Cystic Fibrosis Foundation
4550 Montgomery Avenue
Suite 1100 N
Bethesda, MD 20814

Other Names


Tax Status




Stated Mission

To cure cystic fibrosis (CF) and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research & drug development, partnering with the CF community, and advancing high quality, specialized care.

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Data based on Fiscal Year Ended 12/31/2022

Program Percentage: 85%

The percentage of Cystic Fibrosis Foundation's cash budget it spends on programs relative to overhead (fundraising, management, and general expenses).


Calculated Total Expenses



Cost to Raise $100: $34

How many dollars Cystic Fibrosis Foundation spends on fundraising to raise each $100 of contributions.


Calculated Total Contributions


Government Funding

0% to 24%

Percentage of cash revenue
coming from government sources


Financial Documents

Entity Document Type Tax ID
Cystic Fibrosis Foundation Audited Financial Statements 13-1930701
Cystic Fibrosis Foundation IRS Form 990 13-1930701
Entity: Cystic Fibrosis Foundation
Document Type: Audited Financial Statements
Tax ID: 13-1930701
Entity: Cystic Fibrosis Foundation
Document Type: IRS Form 990
Tax ID: 13-1930701

Governance & Transparency

CharityWatch evaluates certain criteria related to a charity's Governance and Transparency. Donors may want to consider a charity's willingness to be open and transparent with CharityWatch to be a good litmus test for determining its commitment to public accountability.
Cystic Fibrosis Foundation
meets governance benchmarks.
Cystic Fibrosis Foundation
meets transparency benchmarks.
Provides Financial Information
Audit Accessibility
Governance: Policies
Reports regularly & consistently monitoring & enforcing compliance with a written Conflict of Interest Policy
Reports required, annual disclosure by officers, directors, and key staff of interests that could give rise to conflicts
Reports having a written Whistleblower Policy
Reports having a written Document Retention and Destruction Policy
Governance: Financials
Reports providing copy of tax form to all board members prior to filing it with IRS
Reports that financial statements were audited by an independent accountant
Governance: Board of Directors
Reports at least 5 voting board members
51% or more of voting board members reported as independent
Reports documenting minutes of board and board committee meetings
Privacy Policy
Privacy Policy No Sharing  

  Name Title Compensation
1 Jack Mahler, M.D. Chief Investment Officer $2,248,532
  Note: Includes $1,760,233 bonus & incentive compensation.
2 Michael P. Boyle, M.D. President / CEO $1,190,095
3 Earl Lee Managing Director, Investments $1,130,430
Name: Jack Mahler, M.D.
Title: Chief Investment Officer
Compensation: $2,248,532
Note: Includes $1,760,233 bonus & incentive compensation.
Name: Michael P. Boyle, M.D.
Title: President / CEO
Compensation: $1,190,095
Name: Earl Lee
Title: Managing Director, Investments
Compensation: $1,130,430

CharityWatch Analysts perform an in-depth analysis of charities' audited financial statements and IRS tax filings, and often review other documents such as state filings, annual reports, and fundraising contracts during their evaluations. Below are select notes that CharityWatch believes may be of interest to donors.

According to the Cystic Fibrosis Foundation audit of December 31, 2022 (Note 8, Awards payable and commitments):

"As of December 31, 2022, the Foundation has additional medical scientific grant commitments of approximately $115,916,000 which extend through 2027. These subsequent year awards are contingent upon renewal criteria, and therefore the costs and liabilities are not reflected in the [audited] financial statements.

"Certain agreements provide for future contracted drug discovery and development research payments amounting to approximately $92,091,000. These costs will be expensed when the services are provided."

*NOTE: CFF's audited Statement of Financial Position as of December 31, 2022 reports Total Net Assets of $4,443,719,016, which is over 11 times its total expenses for 2022. For purposes of computing CFF's Years of Available Assets at fiscal year-end 12/31/2022, among other adjustments, CharityWatch subtracted out of CFF's fund balance approximately $208 million related to CFF's contingent medical scientific grant commitments and future contracted drug discovery and development research payments as of 12/31/2022 (Audit Note 8). Based on CharityWatch's analysis, CFF had approximately 11.1 years of available assets at 12/31/2022, which results in a downgrade to an "F" rating for holding available assets in reserve equal to 5 years or more of its annual budget.

According to the Cystic Fibrosis Foundation 2022 tax filing, the Foundation reports receiving donated in-kind items on which it placed a total value of $8,860,238. Of this amount, $6,080,597 is described as "Tangible Auction items" (IRS Form 990, Schedule M, Parts I & II).

[Note: CharityWatch generally excludes the value of in-kind (non-cash) donations of goods and services from its calculations of Program % and Cost to Raise $100. More information on how grades are calculated and the treatment of in-kind donations can be found on the Our Process page.]

According to the Cystic Fibrosis Foundation (CFF) 2022 tax filing, CFF reports re: Compensation, Supplemental Information (IRS Form 990, Schedule J, Part III):

Regarding severance payments or change-of-control payments (Schedule J, Part I, Line 4a):

"As part of a severance agreement, the executive received the below indicated amount in 2022. The severance amount was reviewed and opined upon as reasonable by an independent compensation consultant and approved by the organization's compensation committee in accordance with the IRS's intermediate sanctions rules. 

Name: Marc S. Ginsky

Amount: $160,000"

Regarding nonfixed payments to officers, directors, trustees, key employees and highest compensated employees (Schedule J, Part I, Line 7):

"Several individuals listed in Form 990, Part VII, Section A, Line 1a [re: Compensation of Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees], participated in the Foundation's incentive compensation plan... The incentive compensation plan pays non-fixed payments subject to, and based on, the achievement of annual performance objectives established in advance by the compensation committee of the board of trustees. In addition, the incentive compensation plan pays non-fixed payments that relate to a three-year performance period, subject to, and based on, the achievement of long-term performance objectives established in advance by the compensation committee of the board. Any financial performance objectives established under the incentive compensation plan do not include program-related revenues such as royalty streams or lump-sum payments, and sales proceeds from transfer of the foregoing to third parties related to the development and approval of CF drugs."

CFF reports "Bonus & incentive compensation" payments to 14 individuals in 2022. The three highest reported "Bonus & incentive compensation" amounts are:

(1) Jack Mahler, M.D., CEO: $1,760,233, with reported total compensation of $2,248,532;

(2) Earl Lee, Managing Director, Investments: $581,475, with reported total compensation of $1,130,430; and

(3) Eric Koehrsen, Managing Director, Investments: $512,092, with reported total compensation of $1,062,801.

The other eleven reported "Bonus & incentive compensation" payments in 2022 ranged from $43,000 to $297,943, with associated reported total compensation ranging from $629,321 to $1,190,095 (IRS Form 990, Schedule J, Part II).Regarding nonfixed payments to officers, directors, trustees, key employees and highest compensated employees (Schedule J, Part I, Line 7):

In a November 19, 2014 news release by the Cystic Fibrosis Foundation, the Foundation announced:

"... [A]n unprecedented acceleration and expansion of its research, care and patient programs for the CF community. This action is possible as a result of the sale of the Foundation's royalty rights to CF treatments developed by Vertex Pharmaceuticals Inc. The Foundation received $3.3 billion from the sale to Royalty Pharma."


"In addition to increasing its research funding for innovative strategies to target the genetic cause of CF, the Foundation plans to strengthen the specialized care and support that people with CF and their families receive at more than 120 Foundation-accredited care centers across the country. The Foundation will also expand its resources to help people with CF and their families afford costly medications and manage health care coverage and insurance."

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