2025-10-01T16:26:29-05:00 2024-12-31 954557617 Harrington Group CPAs LLP 2698 Mataro Street Pasadena CA 91107 990 2024-01-01 454597425 The Familial Hypercholesterolemia Foundation FAMI 6265834674 5548 First Coast Hwy 204 Fernandina Beach FL 32034 Katherine Wilemon CEO 6265834674 2025-10-01 1 1 Carlos A Davis CPA P02037008 6264036801 2024 2025-03-06 01:10:19Z Family Heart Foundation Katherine Wilemon 5548 First Coast Hwy 204 Fernandina Beach FL 32034 8891212 0 X www.familyheart.org X 2012 CA The mission of the Family Heart Foundation is to save generations of families from heart disease 7 6 22 374 0 0 6160613 8536472 318396 240000 31584 54378 25015 60362 6535608 8891212 0 0 0 0 2598084 3119803 0 0 224010 3764416 4721297 6362500 7841100 173108 1050112 5313676 7350370 1133524 2079880 4180152 5270490 X 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. 0 0 3093173 240000 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). 2288028 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. 1545427 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. 6926628 1 1 0 0 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 25 0 1 22 1 0 0 0 0 0 0 0 0 0 0 0 0 X 7 6 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 0 0 CA X The Organization 6265834674 5548 First Coast Hwy 204 Fernandina Beach FL 32034 Joshua Knowles Chair 1.00 X X 0 0 0 Seth Baum Vice Chair 1.00 X X 0 0 0 Allison Jamison Treasurer 1.00 X X 0 0 0 Katherine Wilemon CEO/Board Member 40.00 X X 387365 0 16071 Keith Ferdinand Board Member 1.00 X 0 0 0 Brian Mittman Board Member 1.00 X 0 0 0 Courtney Riley Board Member 1.00 X 0 0 0 Allison Hawke VP of Operations 40.00 X 208984 0 24874 Barbara Gladders Sr. Healthcare Data Analyst 40.00 X 124000 0 18842 Hilliard Paige Chief Innovation Officer 40.00 X 363165 0 38442 Susan Seim Creative Director 40.00 X 135463 0 14292 Diane MacDougall VP of Science and Research 40.00 X 194774 0 25627 1413751 0 138148 12 0 1 0 BIA Clinical Group LLC 2793 Plymouth Rd Suite J Ann Arbor MI 48105 Statistical & Programming Support 417888 Fairmont Hotel 1717 North Akard Street Dallas TX 75201 Summit venue, A/V Production 347208 Source Heathcare Analytics LLC 4130 ParkLake Ave Ste 400 Raleigh NC 27612 Data 333897 Solstice Health Communications 49 Route 202 Far Hills NJ 07931 Communications & Marketing Consultants 296529 Pri-Med LLC 855 Boylston Street Suite 501 Boston MA 02116 Professional Society Event 274500 13 397795 8138677 8536472 Contract fees 900099 240000 240000 240000 54378 54378 Other income 900099 60362 60362 60362 8891212 240000 0 114740 X 403436 346822 36290 20324 2245269 1930197 201964 113108 128000 112512 11520 3968 179432 158031 16150 5251 163666 143862 14730 5074 119458 84155 30874 4429 23295 23295 945226 874557 52617 18052 1291774 1153154 119357 19263 134200 84840 38113 11247 60342 55201 3399 1742 9447 8030 1228 189 288697 279076 7656 1965 783567 669351 98783 15433 12153 12153 82478 70106 10722 1650 Data & Research 923087 923087 Membership/subscription 34348 33647 701 Bank charges 12785 10470 2315 Registration fees & tax 440 440 7841100 6926628 690462 224010 1455288 3035008 2312202 2859676 531161 362186 2553 0 76431 94109 74860 54182 22602 20678 890893 964437 22546 14276 5313676 7350370 321833 383264 791000 1683485 20691 13131 1133524 2079880 X 788283 4908628 3391869 361862 4180152 5270490 5313676 7350370 1050112 40226 0 X 0 1 X 1 0 X 2147210 3613537 1824933 6160613 8536472 22282765 2147210 3613537 1824933 6160613 8536472 22282765 14260784 8021981 25313 32015 31749 31584 54378 175039 13198 300 4366 25015 60362 103241 22561045 4195354 0.35560 0.35080 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 74860 54182 20678 20678 Lease liabilities - operating leases 13131 13131 X 8931438 40226 40226 8891212 0 8891212 7841100 0 7841100 0 7841100 Part X, Line 2: Family Heart Foundation is exempt from taxation under Internal Revenue Code Section 501(c)(3) and California Revenue and Taxation Code Section 23701d. Generally accepted accounting principles provide accounting and disclosure guidance about positions taken by an organization in its tax returns that might be uncertain. Management has considered its tax positions and believes that all of the positions taken by Family Heart Foundation in its federal and state exempt organization tax returns are more likely than not to be sustained upon examination. Family Heart Foundation's returns are subject to examination by federal and state taxing authorities, generally for three and four years, respectively, after they are filed. X 0 0 0 0 0 0 0 1 0 Katherine Wilemon CEO/Board Member 337365 0 50000 0 0 0 16071 0 0 0 403436 0 0 0 Hilliard Paige Chief Innovation Officer 303165 0 60000 0 0 0 20850 0 17592 0 401607 0 0 0 Allison Hawke VP of Operations 183984 0 25000 0 0 0 13927 0 10947 0 233858 0 0 0 Diane MacDougall VP of Science and Research 185774 0 9000 0 0 0 11557 0 14070 0 220401 0 0 0 Part I, Line 7 Katherine Wilemon's bonus amount was determined and is agreed upon by the Family Heart Foundation Board, each year in the spring, based upon performance from the prior year. Hilliard Paige, Allison Hawke, and Diane MacDougall received bonuses in recognition of their programmatic accomplishments throughout the reporting period. Form 990, Part I, line 1, Description of Organization Mission: 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. Programs and Initiatives are: Family Heart Awareness and Engagement Campaigns Community In Action Corporate Advisory Council Clinical Trial Awareness CASCADE FH Registry Family Heart Database Research FIND Lp(a) FIND FH Leveraging Evidence and Data (LEAD) to Accelerate Pediatric Screening for FH Leveraging Evidence and Data (LEAD) LDL Getting On Appropriate Lipid Lowering ("GOAL") Program Care Navigation Center Family Heart Global Summit Global Network Research Partnerships Cholesterol Connect Form 990, Part VI, Section B, line 11b The Form 990 is e-mailed to each member and reviewed via electronic media prior to filing. Form 990, Part VI, Section B, line 12c Conflicts of interest are monitored annually and reviewed by the governing body prior to approval or determination of action. Form 990, Part VI, Section B, line 15a The CEO's salary is reviewed on an annual basis by the Board of Directors and then approved by the Executive Committee. Part VI, line 15(b) was answered "no" as there were no other officers or key employees as defined in Form 990 instructions who received compensation. Form 990, Part VI, Section C, line 19 All documents are available to the public upon request. Form 990, Part IX, line 11g Consultants/temporary staff: Program service expenses 302,649. Management and general expenses 40,702. Total expenses 343,351. Other professional services: Program service expenses 571,908. Management and general expenses 11,915. Fundraising expenses 18,052. Total expenses 601,875.