The Familial Hypercholesterolemia Foundation

Nonprofit profile at a glance

EIN
454597425
IRS 990 coverage
2012–2025
Forms available
Form 990 2025
Location
Fernandina Beach, FL, USA
Phone
6265834674
Rating
76
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$10,718,916
Expenses
$8,882,596
Assets
$8,670,808
Liabilities
$1,490,097

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

10 people listed

Executive titles in this filing

  • Allison Jamison (Vice President & Treasurer)
  • Katherine Wilemon (CEO/Board Member)

Highest reported compensation

  • Katherine Wilemon (CEO/Board Member): $492,331 total reported compensation
  • Hilliard Paige (Chief Innovation Officer): $405,930 total reported compensation
  • Allison Hawke (VP of Operations): $239,864 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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.

What it reported doing in 2025

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 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.

Operating model

Revenue model
Donor-supported. 98% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Total assets are small relative to annual expenses; liquid coverage is unknown and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 76
  • Transparency & Controls: 70
  • Accountability: 84
  • Sustainability: 49
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 69.8%; rating input score 70
  • Program expense ratio: 83.7%; rating input score 84
  • Fundraising efficiency: $102.49 raised per $1 spent on fundraising; rating input score 85; 85th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 64th percentile among comparable filings
  • Pay-setting controls: 1 of 6 controls in place; rating input score 17
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Pass
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 80%; rating input score 80; 13th percentile among comparable filings
  • Governance controls: 8 of 9 controls in place; rating input score 89
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 17.1%; rating input score 72; 72nd percentile among comparable filings
  • Total-asset coverage ratio: 0.98; rating input score 28; 28th percentile among comparable filings
  • Liabilities to assets ratio: 0.17; rating input score 55; 55th percentile among comparable filings
  • Officer compensation ratio: 19%; rating input score 7; 7th percentile among comparable filings

Growth

  • Program expense growth: 10.9% per year; rating input score 100; 70th percentile among comparable filings
  • Revenue growth: 11.2% per year; rating input score 100; 78th percentile among comparable filings
  • Asset growth: 8.2% per year; rating input score 100; 57th percentile among comparable filings

Details

  • Where the money goes: 69.8% of revenue deployed · 83.7% of spending went to programs
  • Governance: 4 of 5 board members independent · 8 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $7.4M in reported program spending
  • Leadership: top reported pay $492K · 10 people listed · 1 of 6 pay-setting controls reported
  • Highest-paid contractors: 5 contractors listed · $2.3M reported
  • Consistency: 32 of 32 current checks pass
  • Schedules: 5 filed schedules · includes major donors and executive pay
  • Filing history: 13 filing years from 2012 to 2025
  • Contacts: How to reach this organization
  • Money network: 6 filed money-flow records
  • Related organizations: Filed and resolved organization relationships.
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Sustainability: Total-asset coverage ratio scored 28/100.
  • Review — Accountability: Governance controls: Other executive compensation review process not reported.
  • High — Sustainability: Officer compensation ratio scored 7/100.
  • Review — Sustainability: Liabilities to assets ratio scored 55/100.