The Familial Hypercholesterolemia Foundation

EIN: 454597425 501(c)(3) Diseases & Disorders

Fernandina Beach, FL

Total Revenue
$8,891,212
Total Expenses
$7,841,100
Total Assets
$7,350,370
Net Assets
$5,270,490
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Financial Trends

Organization Details

Formation Year
2012
Legal Domicile
CA
Principal Officer
Katherine Wilemon
Phone
6265834674
Tax Period
2024-01-01 to 2024-12-31

The Familial Hypercholesterolemia Foundation, founded in 2012, is a community nonprofit in the Diseases & Disorders sector that reported $8.9M in total revenue in fiscal year 2024. Revenue surged 36% from the prior year, signaling strong growth momentum. Expenses of $7.8M left a modest 12% surplus.

Mission

The Family Heart Foundation was incorporated February 17, 2012 as a California nonprofit corporation, originally as The Familial Hypercholesterolemia Foundation (the "FH Foundation"). This remains the legal name, with "Family Heart Foundation" added dba or doing business as. The name of the organization was changed in December of 2021 to reflect a broader mission. The Family Heart Foundation is a patient-centered nonprofit dedicated to improving the diagnosis and management of inherited lipid disorders, including familial hypercholesterolemia ("FH") and elevated lipoprotein (a) ("Lp(a). Through research, advocacy, and education, the Family Heart Foundation drives change, and empowers families to navigate their own health.

Program Service Accomplishments

Program 1
Expenses: $3,093,173 Revenue: $240,000

RESEARCH: The Family Heart Foundation conducts independent, observational and implementation research. Our major research initiatives involve characterizing familial hypercholesterolemia through our...

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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 FIND-FH & FIND-Lp(a). We have published over 50 peer-reviewed manuscripts, most recently in the European Heart Journal entitled "Lipoprotein(a) and recurrent atherosclerotic cardiovascular events: the US Family Heart Database" (May 7, 2025).

Program 2
Expenses: $2,288,028

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...

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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 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 FH Awareness Day in 2012 and Lp(a) Awareness Day in 2021. We also work at a policy level to represent and elevate the voices of our community and improve care.

Program 3
Expenses: $1,545,427

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) to...

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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) 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.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $8,536,472
Program Service Revenue $240,000
Investment Income $54,378
Other Revenue $60,362
TOTAL REVENUE $8,891,212

Expense Breakdown

Grants Paid $0
Salaries & Benefits $3,119,803
Fundraising Expenses $224,010
Program Expenses $6,926,628
Other Expenses $4,721,297
TOTAL EXPENSES $7,841,100

Year-over-Year Comparison

2024 2023 Change
Revenue $8,891,212 $6,535,608 +0.4%
Expenses $7,841,100 $6,362,500 +0.2%
Net Income $1,050,112 $173,108 +5.1%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
7
Independent Members
6
Employees
22
Volunteers
374

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
4
$403,436
Total Directors
7
$403,436
Key Employees
0
$0
Highest Compensated
5
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
Joshua Knowles Chair 1.00
Officer Director
$0 $0 $0
Seth Baum Vice Chair 1.00
Officer Director
$0 $0 $0
Allison Jamison Treasurer 1.00
Officer Director
$0 $0 $0
Katherine Wilemon CEO/Board Member 40.00
Officer Director
$387,365 $16,071 $403,436
Keith Ferdinand Board Member 1.00
Director
$0 $0 $0
Brian Mittman Board Member 1.00
Director
$0 $0 $0
Courtney Riley Board Member 1.00
Director
$0 $0 $0
Allison Hawke VP of Operations 40.00
Highest
$208,984 $24,874 $233,858
Barbara Gladders Sr. Healthcare Data Analyst 40.00
Highest
$124,000 $18,842 $142,842
Hilliard Paige Chief Innovation Officer 40.00
Highest
$363,165 $38,442 $401,607
Susan Seim Creative Director 40.00
Highest
$135,463 $14,292 $149,755
Diane MacDougall VP of Science and Research 40.00
Highest
$194,774 $25,627 $220,401
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2024 $8,891,212 $7,841,100 $7,350,370 $1,050,112
2023 $6,535,608 $6,362,500 $5,313,676 $173,108
2022 $2,813,780 $4,729,443 $4,488,377 $-1,915,663
2021 $4,759,952 $2,857,007 $6,401,928 $1,902,945
2020 $3,755,847 $3,120,676 $4,371,270 $635,171
2019 $3,459,476 $5,012,467 $3,585,638 $-1,552,991
2018 $3,098,812 $5,685,786 $5,284,854 $-2,586,974
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