Florida · Nonprofit
The Familial Hypercholesterolemia Foundation
The Familial Hypercholesterolemia Foundation (Florida) receives grants from 18 organizations whose IRS filings report $1,594,548 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($721,550). 7 of them have funded it in more than one year, and 63% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $11M
- Funders on record
- 18
- Grants received
- $1.6M
- Net assets
- $7.2M
What The Familial Hypercholesterolemia Foundation does
Mission
The mission of the Family Heart Foundation is to save generations of families from heart disease through timely identification and improved care of familial hypercholesterolemia (FH) and elevated lipoprotein(a) (Lp(a)). Through research, advocacy, and education we play a critical role in driving change and empower families to navigate their own health.
As stated on its FY2025 Form 990.
Programs
EDUCATION: As an honest broker and neutral convener, the Family Heart Foundation provides education and tools to diverse audiences, from patients (through programs like Cholesterol Connect and our Community Engagement programs) to healthcare professionals, policymakers and payers (through programs like GOAL and Lp(a) AWARE). We host an annual scientific meeting, the Family Heart Global Summit and hold educational symposia at primary care medical conferences across the country.
$2,846,957 spent38% of program spendingRESEARCH: The Family Heart Foundation conducts independent, observational and implementation research. Our major research initiatives involve characterizing familial hypercholesterolemia through our national CASCADE FH Registry, analyzing current screening rates, diagnosis and burden of disease of high lipoprotein(a), FH, and high LDL-C through our Family Heart Database and quality improvement research through our FIND-Lp(a), GOAL and Lp(a) AW(a)RE programs. We have published over 70 peer-reviewed manuscripts most notably in the European Heart Journal entitled "Lipoprotein(a) and recurrent atherosclerotic cardiovascular events: the US Family Heart Database". This landmark publication was officially selected by the European Heart Journal as a Top 10 Dyslipidemia Study globally.
$2,436,983 spent$10,000 earned by the program33% of program spendingADVOCACY: The Family Heart Foundation provides individualized resources to those living with genetic dyslipidemias through our Care Navigation Center. We also engage and support communities through on-site community engagement, education and screening programs. In addition, we raise awareness of these highly undiagnosed conditions through national media and awareness campaigns, The Family Heart Foundation established FHAwareness Day in 2012 and Lp(a) Awareness Day in 2021. We also work at a policy level (GOAL and Lp(a) AW(a)RE programs) to represent and elevate the voices of our community and improve care.
$2,152,213 spent29% of program spending
The 3 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $7,436,153.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2017 to 2018, from $7.6M to $5.3M (−31%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2020 7% · 2021 9% · 2022 17% · 2023 3% · 2024 4%. Grants only. Government contracts and fees sit inside program revenue.
98% of The Familial Hypercholesterolemia Foundation’s revenue is contributions — more reliant on donations than three-quarters of its peers (7% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 3 of the last 9 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Katherine Wilemon
CEO/Board Member
Board chair
Seth Baum
Chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 2 funders to 4 funders, grant income rose $54k → $166k.
8 of 18 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 63% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of The Familial Hypercholesterolemia Foundation’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
The Familial Hypercholesterolemia Foundation leans on a few funders — its largest provides 45% of grant income and the top three 84%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
67% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund The Familial Hypercholesterolemia Foundation.
Largest funder’s share by year: 2017 82% · 2018 52% · 2019 60% · 2020 83% · 2021 69% · 2022 59% · 2023 77% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
29% of The Familial Hypercholesterolemia Foundation's funders are still giving 3 years after their first grant; 39% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
63% of The Familial Hypercholesterolemia Foundation's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $586k that is directly attributable, 100% of it comes from funders outside Florida, across 6 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $1.0M arriving through sponsors registered in 7 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
The Familial Hypercholesterolemia Foundation runs a healthier operating margin than three-quarters of the 2,969 health nonprofits its size.
this organization peer median middle 50% of peers· 2,969 health nonprofits $10M–$100M, FY2025
Organizations like The Familial Hypercholesterolemia Foundation
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Florida
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
84% of spending goes to programs.
Governance
Public support
45%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for The Familial Hypercholesterolemia Foundation: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds The Familial Hypercholesterolemia Foundation?
- The Familial Hypercholesterolemia Foundation (Florida) receives grants from 18 organizations whose IRS filings report $1,594,548 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($721,550). 7 of them have funded it in more than one year, and 63% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does The Familial Hypercholesterolemia Foundation have?
- IRS filings report 18 organizations giving $1,594,548 in grants to The Familial Hypercholesterolemia Foundation, 7 of which have funded it in more than one year.
- Who is the largest funder of The Familial Hypercholesterolemia Foundation?
- FIDELITY INVESTMENTS CHARITABLE GIFT FUND is the largest funder on record, with $721,550 in grants. The full list of funders is on this page.
- How can an organization like The Familial Hypercholesterolemia Foundation find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Florida. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
Play a game about who funds Familial Hypercholesterolemia →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 18 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing