CYSTIC FIBROSIS FOUNDATION Charity Report

Public IRS 990 nonprofit record

CYSTIC FIBROSIS FOUNDATION

EIN 13-1930701 · Diseases, Disorders & Medical Disciplines (G200)

What they do

to CURE CF and PROVIDE ALL PEOPLE WITH CF THE OPPORTUNITY to LEAD LONG, FULFILLING LIVES BY FUNDING RESEARCH and DRUG DEVELOPMENT, PARTNERING WITH THE CF COMMUNITY, and ADVANCING HIGH-QUALITY, SPECIALIZED CARE.

Before you give

Should I give to this charity?

Easy charity check

Look at where the money went

Of every $100 spent, about $79.00 was reported for mission work. Use the spending picture below and ask what results that work produced.

Plain answer: A tax form cannot prove that a charity is doing good. It can show how the charity says it spent its money—and point out questions you should ask.

Basic facts we verified

IRS warning checkNo IRS revocation warning appears in this data.

Money report from 2024The charity has a recent tax report to read.

They explain their jobThe charity tells us what it is trying to do.

They name their leaders29 people are listed in the latest report.

You can reach themThey list contact information, so you can ask questions.

Money made simple

97.45%of revenue went to mission work79.0% of expenses · Program services

9.87%of revenue went to fundraising8.0% of expenses

$123.42spent for every $100 of revenueSpending was higher than revenue this year.

16.11%of revenue went to management and office costs13.1% of expenses

$11.35in assets for every $1 spent this yearSome assets cannot be spent right away.

27.0%of its money came from giftsOther money may come from services or investments.

Ask these three easy questions

Who did you help? Ask for a recent story or report that shows real results.
What will my money do? Ask exactly what your gift will pay for.
Is this really the charity? Give only through its official website or confirmed phone number.

Worth asking: Expenses exceeded revenue by $83,340,599 this year. Ask whether that was planned or caused by a one-time event.

Pay context: The highest compensation shown in this filing is $1,942,627 for JOHN C MAHLER JR MD (CHIEF INVESTMENT OFFICER). Compare pay with organizations of similar size and complexity.

Bottom line: Do not decide from a name, mission statement, or tax status alone. Look at where the money went, then ask what changed, who was helped, and what your gift will do. YouCanGiveBack does not endorse or grade organizations.

Money

Financial picture

Tax year 2024

A plain-language look at the latest Form 990 figures available. These numbers help you ask better questions; they do not, by themselves, rate whether a charity is good or bad.

$100revenue

How each $100 of revenue was used

The large number compares each expense with revenue. The smaller number shows its share of total expenses.

Total reported revenue$355,798,320

Mission workProgram services$346,709,36697.45% of revenue79.0% of expenses

ManagementOffice and general costs$57,319,38516.11% of revenue13.1% of expenses

FundraisingAsking for donations$35,110,1699.87% of revenue8.0% of expenses

Total expenses$439,138,919123.42% of revenue

Expenses were greater than revenue, so the colored ring fills the available $100 and the total above 100% is shown below.

Has the pattern changed?

Colored bars = expense mix: how each year’s expenses were divided. Total expenses vs. revenue shows whether the charity spent less or more than it received. The current filing is first.

YearExpense mixDetails

2024CurrentExpense mix: 79.0% mission · 13.1% management · 8.0% fundraisingTotal expenses: 123.42% of revenue

2023Expense mix: 81.6% mission · 11.1% management · 7.3% fundraisingTotal expenses: 151.84% of revenue

2022Expense mix: 81.5% mission · 10.8% management · 7.7% fundraisingTotal expenses: 159.54% of revenue

2021Expense mix: 85.1% mission · 9.4% management · 5.6% fundraisingTotal expenses: 90.02% of revenue

2020Expense mix: 85.9% mission · 8.4% management · 5.7% fundraisingTotal expenses: 47.64% of revenue

2019Expense mix: 81.8% mission · 9.9% management · 8.2% fundraisingTotal expenses: 57.55% of revenue

2018Expense mix: 80.8% mission · 11.2% management · 8.0% fundraisingTotal expenses: 122.52% of revenue

2017Expense mix: 82.7% mission · 8.9% management · 8.4% fundraisingTotal expenses: 106.27% of revenue

Money in and money out

Revenue$355,798,320

Expenses$439,138,919

Annual shortfall $83,340,599 Expenses were higher than revenue for this filing year.

Reported spending amounts

Mission work means the Form 990 category called program services. These are reported accounting categories—not an independent measurement of results.

Mission work (program services)$346,709,366 · 79.0% of expenses

Management and office costs$57,319,385 · 13.1% of expenses

Fundraising$35,110,169 · 8.0% of expenses

See all reported dollar amounts

Revenue$355,798,320

Expenses$439,138,919

Assets$4,986,222,387

Income$1,863,238,088

Contributions$95,892,260

Mission work (program services)$346,709,366

Fundraising$35,110,169

Grants given$1,539,853,543

Average grant$308,032

Management and general$57,319,385

Executive compensation (total)$6,356,579

Stocks and bonds$2,761,100,818

Accounting fees$515,914

Investing fees$3,153,831

People

Leadership and board

Tax year 2024

Names, titles, time, and compensation below are reported by the organization on its Form 990.

People reported as paid

Person and titleCompensation

JOHN C MAHLER JR MDCHIEF INVESTMENT OFFICER · 40 hrs/week $1,942,627Base $1,866,868 · Other $75,759

EARL A LEEMANAGING DIRECTOR, INVESTMENTS · 40 hrs/week $1,594,752Base $1,226,269 · Other $368,483

ANDREW LEWISMANAGING DIRECTOR, INVESTMENTS · 40 hrs/week $1,401,714Base $1,363,454 · Other $38,260

ERIC KOEHRSENMANAGING DIRECTOR, INVESTMENTS · 40 hrs/week $1,280,707Base $976,105 · Other $304,602

MICHAEL P BOYLE MDPRESIDENT & CEO · 40 hrs/week $1,275,151Base $1,054,388 · Other $220,763

IRENA BARISICEVP & CHIEF OPERATING & FINANCIAL OFFICER · 40 hrs/week $844,555Base $761,939 · Other $82,616

GENTIANA S AROVASMANAGING DIRECTOR, INVESTMENTS OPERATIONS · 40 hrs/week $819,659Base $642,532 · Other $177,127

JOHN P CLANCY MDSVP, CLINICAL RESEARCH · 40 hrs/week $765,204Base $669,826 · Other $95,378

ALBERT FARO MDCHIEF MEDICAL OFFICER BEG. 7/1/2024 · 40 hrs/week $671,590Base $571,672 · Other $99,918

STEVEN ROWE MDEVP, CHIEF SCIENTIFIC OFFICER · 32 hrs/week $667,206Base $534,655 · Other $132,551

MICHAEL B CAVADELSVP, CHIEF LEGAL OFFICER · 40 hrs/week $661,197Base $558,135 · Other $103,062

ENRIQUE LIN SHIAO PHDPRINCIPAL OF MISSION RELATED INVESTMENTS · 40 hrs/week $589,642Base $507,691 · Other $81,951

Compensation alone does not tell whether pay is reasonable. Consider the charity’s size, work, location, and results.

See everyone listed on the board or leadership roster (29)

JOHN C MAHLER JR MDCHIEF INVESTMENT OFFICER

EARL A LEEMANAGING DIRECTOR, INVESTMENTS

ANDREW LEWISMANAGING DIRECTOR, INVESTMENTS

ERIC KOEHRSENMANAGING DIRECTOR, INVESTMENTS

MICHAEL P BOYLE MDPRESIDENT & CEO

IRENA BARISICEVP & CHIEF OPERATING & FINANCIAL OFFICER

GENTIANA S AROVASMANAGING DIRECTOR, INVESTMENTS OPERATIONS

JOHN P CLANCY MDSVP, CLINICAL RESEARCH

ALBERT FARO MDCHIEF MEDICAL OFFICER BEG. 7/1/2024

STEVEN ROWE MDEVP, CHIEF SCIENTIFIC OFFICER

MICHAEL B CAVADELSVP, CHIEF LEGAL OFFICER

ENRIQUE LIN SHIAO PHDPRINCIPAL OF MISSION RELATED INVESTMENTS

BRUCE MARSHALL MDCHIEF MEDICAL OFFICER ENDING 7/1/2024

TERESA L ELDERVICE CHAIR

ELISE EBERWEINTRUSTEE

STEVEN SHAK MDTRUSTEE

ROBERT H NIEHAUSVICE CHAIR

PAUL A MOTENKOTRUSTEE

LOUIS A DEFALCOVICE CHAIR

KC BRYAN WHITECHAIR

KATE ODONNELLTRUSTEE

JOHN S WEINBERGEXECUTIVE VICE CHAIR

CAROLE B GRIEGO MDTRUSTEE

JESSICA H BOYD MDTRUSTEE

DAVID A MOUNTTREASURER

DODZIE SOGAH PHDTRUSTEE

ERIC SCHNEIDER MDTRUSTEE

ERIC R OLSON PHDVICE CHAIR

DOMINIC J CARUSOTRUSTEE

About this charity

Recognized since: January 1957
Location: 4550 MONTGOMERY AVESTE 1100 N, BETHESDA, MD 20814-0000
County: Montgomery
In care of: % MICHAEL P BOYLE MD
Primary officer: MICHAEL P BOYLE MD, PRESIDENT & CEO

How to reach them

WebsiteVisit the charity’s website Emailcompass@cff.org Phone(301) 951-4422

Filing and classification

Latest tax year: 2024
Tax period began: January 1, 2024
Return type: 990
Tax preparer: KPMG LLP
NTEE classification: Diseases, Disorders & Medical Disciplines (G200)
IRS tax category: Voluntary Health Organizations
Grant-giving organization: Yes