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The Familial Hypercholesterolemia Foundation
Also known as Family Heart Foundation
The Familial Hypercholesterolemia Foundation reported $10.7 million in revenue and $8.9 million in expenses for calendar year 2025. Of every $100 it spent, $83.71 went to program services, $15.13 to management and general costs and $1.16 to fundraising. Its largest source of revenue was contributions and grants: 98.2% of the total. The highest compensation it reported for one person was $492,331 (CEO/Board Member). 10 people received more than $100,000 in reportable compensation. Revenue rose 210% between 2019 and 2025. Source: Form 990, 2025.
Where $100 of spending went
Calendar year 2025 · Form 990, Part IX, line 25 · total expenses $8.9MFor context, the median across 322 covered diseases, disorders & medical disciplines charities: $88.77 programs, $10.83 management, $0.40 fundraising (medians computed separately, so they may not sum to $100).
Where $100 of revenue came from
Calendar year 2025 · Form 990, Part VIII · total revenue $11MThe 990 scorecard · same measures for every charity, no grades
| Measure | 2025 | Median |
|---|---|---|
| Program services Part IX 25(B) ÷ 25(A) | 83.7% | 87.0% |
| Management & general Part IX 25(C) ÷ 25(A) | 15.1% | 10.6% |
| Fundraising Part IX 25(D) ÷ 25(A) | 1.2% | 0.4% |
| Fundraising cost per $1 of contributions Part IX 25(D) ÷ Part VIII 1h | $0.01 | $0.03 |
| Contributions & grants share of revenue Part VIII 1h ÷ 12 | 98.2% | 26.4% |
| Government grants share of revenue Part VIII 1e ÷ 12 | 0.0% | 0.5% |
| Program service revenue share Part VIII 2g ÷ 12 | 0.1% | 58.9% |
| Highest reported compensation Part VII-A, columns D–F | $492,331 | $391,657 |
| Highest compensation as share of expenses Part VII-A ÷ Part IX 25(A) | 5.54% | 1.45% |
| People paid over $100,000 Part VII, line 2 | 10 | 10 |
| Net assets, in months of expenses Part X 33(B) ÷ monthly expenses | 9.7 | 7.7 |
| Independent voting board members Part VI 1a–1b | 4 of 5 | 100.0% |
A median is context, not a target: hospitals, universities, food banks and grantmakers spend in very different ways. What these measures can and can't tell you.
What the money paid for, in its own words
2025 · Form 990, Part III · the three largest programs by expenseEDUCATION: 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
RESEARCH: 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…
ADVOCACY: 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…
Highest reported compensation
2025 · Form 990, Part VII, Section A · roles as filed; names are in the filing, not here| Role | From this org | From related orgs | Other | Total |
|---|---|---|---|---|
| CEO/Board Member Director/trustee, officer, 40.00 hrs/week | $468,514 | $0 | $23,817 | $492,331 |
| Chief Innovation Officer Highest compensated employee, 40.00 hrs/week | $366,568 | $0 | $39,362 | $405,930 |
| VP of Operations Highest compensated employee, 40.00 hrs/week | $213,767 | $0 | $26,097 | $239,864 |
| VP of Science and Research Highest compensated employee, 40.00 hrs/week | $193,049 | $0 | $13,374 | $206,423 |
| Creative Director Highest compensated employee, 40.00 hrs/week | $155,960 | $0 | $16,129 | $172,089 |
| Director Quality/Research Operations Highest compensated employee, 40.00 hrs/week | $154,200 | $0 | $17,581 | $171,781 |
10 people received more than $100,000 in reportable compensation from The Familial Hypercholesterolemia Foundation (Part VII, line 2). Compensation of current officers, directors and key employees totaled $492K (Part IX, line 5).
7 years of filings
Form 990, Parts I, VII, IX and X · each row is that year's own filing, linkedGovernance answers, as filed
2025 · the organization's own yes/no answers; explanations, if any, are in Schedule O of the filing · what each means- Voting board members, and how many are independent Part VI, lines 1a–1b5 · 4 independent
- Audited financial statements Part XII 2bYes
- Conflict-of-interest policy Part VI 12aYes
- Whistleblower policy Part VI 13Yes
- Document retention policy Part VI 14Yes
- Independent process for top executive pay Part VI 15aYes
- Board given the 990 before filing Part VI 11aYes
- Family or business ties among insiders Part VI 2No
- Aware of a significant diversion of assets Part VI 5No
- Excess benefit transaction with an insider Part IV 25aNo
- Loans to or from insiders outstanding Part IV 26No
- Lobbying, or a 501(h) election in effect Part IV 4No
- Over $15,000 of professional fundraising services Part IV 18No
- Over $10,000 of activity outside the U.S. Part IV 14bNo
- Employees Part I, line 523
- Volunteers Part I, line 6374
Largest outside contractors
2025 · Form 990, Part VII, Section B · businesses only| Endless Health Test kits & analysis lab | $898,887 |
| Pri-Med LLC Professional Society Event | $501,850 |
| Source Heathcare Analytics LLC Data | $385,341 |
| Emory Healthcare Consulting | $295,261 |
| BIA Clinical Group LLC Statistical & Programming Support | $239,238 |
Individuals listed as contractors are left out. 12 contractors were paid more than $100,000 in all.
Private foundation grants it received
1 private foundation reported grants to The Familial Hypercholesterolemia Foundation totaling $494 on their tax year 2023 Form 990-PF returns. See which foundations, on WHOFUNDS.
Source: WHOFUNDS open grant graph, matched from Form 990-PF Part XV.
Correct a figure or respond
Every number above is copied from The Familial Hypercholesterolemia Foundation's own Form 990. If one doesn't match the filing, that's our error and we'll fix it. If you work for The Familial Hypercholesterolemia Foundation, you can publish a response that is linked from this page.
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Of every $100 The Familial Hypercholesterolemia Foundation spent in 2025, $83.71 went to programs. The full breakdown, from its IRS Form 990:
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Questions people ask
How much of The Familial Hypercholesterolemia Foundation's spending goes to programs?
In calendar year 2025, The Familial Hypercholesterolemia Foundation reported that 83.7% of its $8.9 million in expenses went to program services, 15.1% to management and general and 1.2% to fundraising (Form 990, Part IX).
How much does The Familial Hypercholesterolemia Foundation pay its top executive?
The largest total compensation The Familial Hypercholesterolemia Foundation reported for one person in calendar year 2025 was $492,331, for the role of CEO/Board Member (Form 990, Part VII, including compensation from related organizations and other compensation).
Where does The Familial Hypercholesterolemia Foundation get its money?
Of $10.7 million in revenue in calendar year 2025, 98.2% came from contributions and grants and 0.1% from program service revenue (Form 990, Part VIII).
Is The Familial Hypercholesterolemia Foundation a registered charity?
The IRS lists EIN 45-4597425 as a 501(c)(3) organization (publicly supported organization (170(b)(1)(a)(vi))), and its records show contributions as tax-deductible. Form 990 filings on record here cover tax years 2019, 2020, 2021, 2022, 2023, 2024, 2025. A filing shows what the organization reported; it doesn't by itself show whether a program works.
Sources
- 2025: Form 990 for calendar year 2025, object 202632579349301323 · read the filing · XML
- 2024: Form 990 for calendar year 2024, object 202532749349300533 · read the filing
- 2023: Form 990 for calendar year 2023, object 202413099349301466 · read the filing
- 2022: Form 990 for calendar year 2022, object 202342169349300819 · read the filing
- 2021: Form 990 for calendar year 2021, object 202213189349304831 · read the filing
- 2020: Form 990 for calendar year 2020, object 202133139349305373 · read the filing
- 2019: Form 990 for calendar year 2019, object 202042419349300944 · read the filing
All filings for EIN 45-4597425: ProPublica Nonprofit Explorer · IRS Tax Exempt Organization Search. Figures are as the organization reported them; we have not audited them.