2024-11-04T10:51:30-06:00 2023-12-31 954557617 Harrington Group CPAs LLP 2698 Mataro Street Pasadena CA 91107 990 2023-01-01 454597425 The Familial Hypercholesterolemia Foundation FAMI 6265834674 5548 First Coast Hwy 204 Fernandina Beach FL 32034 Katherine Wilemon CEO 6265834674 2024-11-04 1 1 Carlos A Davis CPA P02037008 6264036801 2023 2024-10-15 13:58:12Z X Family Heart Foundation Katherine Wilemon 5548 First Coast Hwy 204 Fernandina Beach FL 32034 6535608 0 X www.thefhfoundation.org X 2012 CA The mission of the Family Heart Foundation is to save generations of families from heart disease 7 6 17 202 0 0 1824933 6160613 952732 318396 31749 31584 4366 25015 2813780 6535608 0 0 0 0 1552030 2598084 0 0 134985 3177413 3764416 4729443 6362500 -1915663 173108 4488377 5313676 554614 1133524 3933763 4180152 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 1390395 Getting On Appropriate Lipid Lowering ("GOAL") Program - The GOAL program aims to help more patients with severe hypercholesterolemia at high risk for primary or secondary ASCVD to reach their LDL-C goal and stay there, thereby lowering their risk for a cardiac event. Guided by the "People" analysis, the Family Heart Foundation has identified key points along the patient journey where multi-stakeholder interventions have the potential to improve care and where the Family Heart Foundation is well positioned to have an impact. This program takes a multi-stakeholder approach, including payers, health systems, HCPs, the patient community, and partners and make the case for better care and identify actional steps to improve care. In 2023, the Family Heart Foundation had the highest ever attended/viewed Health Care Provider education programing (HCP Live) based on our "People" analysis.The GOAL program is leveraging the Family Heart Foundation's quantitative and qualitative insights from the "People" analysis to motivate key stakeholders to improve LDL-C goal attainment in high-risk populations. It builds on previous work the Family Heart Foundation has done as part the FH Optimal Care in the US ("FOCUS") program, creating, and disseminating effective tools for patients, healthcare practitioners, policy makers, and payers, to inform diagnosis, treatment, and navigating the healthcare system. 742948 Research Partnerships - In addition to research drawing on the CASCADE FH Registry and the Family Heart Database, the Family Heart Foundation partnered on five (5) federally-funded grants in 2023.A National Institutes of Health ("NIH") grant with Columbia University and Boston Children's Hospital utilizes a health policy computer simulation model to assess and compare the societal value of various FH screening approaches. Drawing upon multiple data sources and using computer simulation models of FH screening, including using the Family Heart Database and FIND FH Model, Family Heart Foundation teams are working to quantify the potential benefits and possible harms of childhood and/or adult treatment. The Family Heart Foundation is focused on determining the optimal age for first screening and the incremental value of adding confirmatory genetic testing or family cascade screening.Another NIH funded grant in partnership with Geisinger, IMPACT-FH, is learning from both genetic screening and machine learning methods for flagging FH, including FIND FH. Once an FH diagnosis has been made, the research team is working to optimize and test novel strategies to improve family communication and uptake of cascade family screening. The ultimate goal of this program is to utilize tools from Implementation Science to develop a comprehensive FH cascade screening program that can be scaled to reach more families. The Family Heart Foundation is partnering with Penn Medicine, University of Pennsylvania Health System, on The BEAT FH grant funded by the Department of Defense Peer Reviewed Medical Research Program. This project is using Family Heart Foundation's FIND FH Model to "flag" individuals within Penn Medicine's electronic health record database who warrant screening for FH. The Family Heart Foundation is utilizing behavior economics to design and implement innovative approaches to facilitate outreach and engagement as well as guideline-recommended evaluation and medical care for patients flagged by the model. In addition, at Penn Medicine and Northwestern University, Family Heart Foundation is partnering on an NIH funded grant to use both implementation science and behavioral economics to improve cascade family screening for FH while addressing racial, ethnic, and gender disparities. This randomized controlled study will design and test multiple approaches to cascade family screening including direct outreach by Family Heart Foundation's care navigation team. Lastly, the Family Heart Foundation is involved in a Department of Defense Grant with UT Southwestern and Dallas-VA Health systems (DISCOVER FH). This grant involves family cascade screening for FH with the Family Heart Foundation acting as a centralized screening hub for family members of individuals already diagnosed with FH. The screening will include genetic testing and lipid testing for family members.Lastly, the Family Heart Foundation is involved in a Department of Defense Grant with UT Southwestern and Dallas-VA Healths Systems (DISCOVER FH). This grant involves family cascade screening for FH with the Family Heart Foundation acting as a centralized screening hub for family members of individuals already diagnosed with FH. The screening will include genetic testing and lipid testing for family members. 466607 318396 FIND FH Program - FIND FH is a national precision screening initiative that utilizes machine learning, natural language processing, and data mining techniques to identify individuals whose profiles are consistent with FH. FIND FH includes the development, validation, and implementation of data models to flag individuals who need to be screened by a clinician for a possible FH diagnosis. This initiative directly addresses the fact that most individuals with FH are currently undiagnosed and do not have the opportunity to reduce their risk of early and aggressive cardiovascular disease. The FIND FH model searches healthcare encounter data sets including lab results, claims data, and electronic health record systems. With the results, the Family Heart Foundation identifies healthcare providers ("HCP") with patients who have medical records containing key features consistent with an individual having FH.Nationally, FIND FH has identified over 1.3 million individuals with profiles consistent with FH. The Family Heart Foundation is implementing HCP and individual engagement practices at multiple major health systems participating in the Flag Identify Network Deliver Collaborative Learning Network. These large-scale implementation projects are designed to reduce barriers to evidence-based care and to improve patient outcomes. At each health system, the Family Heart Foundation engages stakeholders and act as a hub for learning across roles within the health system. The Family Heart Foundation has identified and addressed numerous barriers and facilitators to implementation. This growing expertise positions us as a leading organization to implement FH programs in clinical settings across the US. Family Heart Awareness and Engagement Campaigns - The Family Heart Foundation has launched several global awareness initiatives since its founding, beginning with the establishment of September 24th as FH Awareness Day in 2012. This day has since been recognized across the globe each year, reaching millions of people. In 2021, the Family Heart Foundation announced that the first-ever Lp(a) Awareness Day would be March 24, 2022 and is now celebrated annually. FH Awareness Day and Lp(a) Awareness Day are recognized across medical societies, advocacy associations, corporate organizations, and public health institutions at home and abroad.In addition to the annual awareness days, we invested in two major campaigns: More Families, More Hearts CampaignTM and the LDL Safe Zone.More Families, More Hearts is a national communications campaign aimed to reach a large audience and drive the urgency to address family heart disease. Key messages were developed with the goal of activating people who may never have heard of FH or Lp(a) to recognize and understand lipid disorders as causes of heart disease and stroke. The campaign was designed to motivate individuals to visit to Family Heart Foundation website to learn more about inherited lipid disorders and what they can do to manage their elevated LDL-C and/or Lp(a) in order to lower not only their individual risk for atherosclerotic cardiovascular disease ("ASCVD"), but also their family's risk. One aspect of the campaign focused on the increased risk faced by members of America's Black population. Our efforts included Consumer, health, and wellness online and print outlets highlighting genetic conditions that increase the risk of early heart disease among Black /African Americans. At the completion of this campaign, we received a PRism award from the PRSA-LA in the Integrated Communications for Not-for-Profits category.In 2022, the Family Heart Foundation launched the Getting to GOAL (Getting On Appropriate Lipid Management) Program in response to findings from the PPPLLL (Patient, Payer, Practitioner Lipid Lowering Landscape) Analysis. It showed that millions of high-risk Americans never get their LDL to recommended levels, leaving them in the "Danger Zone."In 2023, the Family Heart Foundation launched the "Safe Zone" campaign. The national, patient-facing awareness campaign focused on encouraging action to manage lipids to prevent cardiovascular disease and future repeat cardiovascular events. The campaign lead audiences to the landing page, LDLSafeZone.org, to understand the risks of high LDL cholesterol and learn more about their "Safe Zone." From there, they were directed to the Care Navigation Center.On the evening of Sunday, March 5, 2023 The Atlantic hosted a roundtable discussion exclusively underwritten by Amgen with support from the Family Heart Foundation. Aligned with the American College of Cardiology Conference in New Orleans, the roundtable fostered an environment for candid and constructive discourse about the state of cardiovascular care. The discussion was anchored in findings from the Family Heart Foundation's PPPLLL analysis and focused on the central question:How can healthcare providers, payers and advocacy groups come together to improve the state of ASCVD care in the U.S. by optimizing LDL management, addressing disparities in care, and reducing barriers patients face in diagnosis and achieving treatment goals?A high-level and diverse group of opinion leaders joined for the dynamic conversation, which was led by AtlanticLIVE Contributor Kathleen Koch. Family Heart Foundation Founder Katherine Wilemon provided key insights during the conversation along with Cat Davis Ahmed and Amgen's Jyothis George.In April of 2023, we were invited to moderate and participate in the Health Equity Summit sponsored by The Atlantic called "Heart of the Matter: Addressing a Public Health Crisis of Inequitable Proportion." The session had over 60 in-person attendees and was viewed by more than 53,000 people virtually. The following month, a digital publication was released by The Atlantic called "The Heart of the Matter" featuring data from the Family Heart Foundation.Community in Action - The Community in Action Program supports and mobilizes the most important stakeholders - people living with FH, Homozygous FH ("HoFH"), and elevated Lp(a). The Family Heart Foundation collaborates directly with individuals who are impacted by these inherited lipid disorders, their family members and caregivers, and medical experts to accomplish the Family Heart Foundation's common goal of finding every family with FH and/or high Lp(a) and ensuring they have the opportunity to live longer, healthier lives. Critical activities of the Community in Action programs include Outreach, Education, and Support: As the leading resource for the FH, HoFH, and Lp(a) Communities, the Family Heart Foundation produces education tools and resources to ensure individuals and families have the information they need to understand their condition and advocate for optimal care. The Family Heart Foundation's monthly newsletters keep the Community informed of the work and the latest research in the field of inherited lipid disorders, the website receives 50,000 monthly visitors, and the Family Heart Foundation's active social media channels inform and engage people across the US and worldwide.CASCADE FH Registry - In 2013, the Family Heart Foundation launched the national FH patient registry in the US with the goal of improving the understanding of the state of diagnosis, treatment, and outcomes for FH in the United States. The Cascade Screening for Awareness and Detection of Familial Hypercholesterolemia ('CASCADE FH Registry') collects comprehensive longitudinal data on adults and children with diagnosed FH, including baseline and follow-up information on demographics, laboratory values, treatment, and clinical events. Since then, the Family Heart Foundation has convened a network of over forty (40) leading clinical sites across the US and has enrolled over 7,000 individuals in the Registry who are followed annually. In partnership with the CASCADE FH Registry principal investigators, the Family Heart Foundation has published over twenty (20) manuscripts, abstracts, and posters, contributing to the evidence base for healthcare decision making for FH at the patient, healthcare provider, health system, and policy levels. In 2023, a key manuscript was published in the Journal of the American Heart Association entitled: Contemporary Homozygous Familial Hypercholesterolemia in the United States: Insights From the CASCADE FH Registry (Cuchel, M, et al.). The CASCADE FH Registry has quantified gaps in care, including late diagnosis, delayed treatment, disparities in care, cardiovascular outcomes, and factors that contribute to low-density lipoprotein ("LDL") goal attainment and to cardiovascular risk. This is the only longitudinal observational research study of its kind in the US.Family Heart Database - The Family Heart Database includes more than 300 million individuals in the US at risk, being treated, or being evaluated for cardiovascular disease, including laboratory results for over 132 million individuals. The goal of this data resource is to improve the understanding, identification, and management of individuals at high risk for ASCVD due to inherited lipid disorders. This database provides important insights into the barriers to care along the patient journey and real-world insights into how individuals with heart disease or elevated lipids are being managed, including prescribing, coverage, fulfillment, and outcomes against a backdrop of age, ethnicity, race, sex, and income. Family Heart Foundation has sixteen (16) peer-reviewed publications based on the Family Heart Database research to date. The Family Heart Database is an expansive source of data insights on the ASCVD, Lp(a), FH, HoFH and hypercholesterolemia populations. 2824249 FIND Lp(a)TM Program - In 2023, the Family Heart Foundation was successful in expanding the success of the Flag, Identify, Network Deliver (FIND) Initiative to identify those at risk for high lipoprotein(a), also known as Lp(a). The FIND Lp(a) program, which launched in August 2023, is a precision screening program focused on empowering patients and their medical teams with critical knowledge that can improve cardiovascular disease outcomes in high-risk populations. FIND Lp(a) aims to dramatically accelerate Lp(a) testing in major health systems across the U.S. by leveraging artificial intelligence to recognize individuals with heart disease who are most likely to have a genetic condition that causes inflammation, clotting, and clogging in the vascular system.The FIND Lp(a) program will support participating health system partners to offer screening, diagnosis, medical care, and resources to individuals who have elevated Lp(a), and who might otherwise remain undetected by current practices. Learnings from this innovative initiative will facilitate the creation of sustainable strategies for addressing elevated Lp(a) and the development of best practices and tools which will be made available to other health systems so that Lp(a) screening can become part of routine care.Patient, Practitioner, and Payer Lipid Lowering Landscape ("PPPLLL") Analysis - Pronounced "People", this analysis explores the barriers to achieving guideline-recommended low-density lipoprotein-cholesterol LDL-C goals for high-risk patients. The Family Heart Foundation "People" analysis utilized the Family Heart Foundation's national database, and patient and provider insights, to identify the barriers to achieving LDL-C goals, and the points along the patient journey where targeted interventions with multiple stakeholders could address those barriers and improve access to care. The quantitative and qualitative insights from the "People" analysis have informed the GOAL program.Care Navigation Center -The Family Heart Foundation provides individual support to help people living with or at risk for early heart disease due to FH, HoFH, and elevated Lp(a) through its Care Navigation Center services. The Family Heart Foundation guides and support patients, family members, and health care providers as they navigate the patient journey and access care. This includes connecting patients and caregivers with a specialist using the Family Heart Foundation's interactive "Find a Specialist" map, offering tools and services developed by the Family Heart Foundation to support diagnosis, treatment, insurance navigation, family screening, and clinical trial participation, advocating with payers to improve access to care on behalf of individual patients, as well as connecting patients and caregivers with peer support. Family Heart Global Summit - The Family Heart Global Summit is the only scientific conference devoted to the care and treatment of FH and elevated Lp(a). This annual event convenes world-renowned experts in FH, Lp(a), genetics, public health, healthcare policy, implementation science, and precision health. The conference features compelling and cutting-edge presentations that highlight the latest data, explore real-world implementation, and leverage perspectives from individuals with FH and elevated Lp(a) to improve identification, diagnosis, and care of inherited lipid disorders. The Family Heart Global Summit drives collaborative developments and effective solutions in an accelerated and thoughtful manner to stop premature heart disease and stroke. Global Network - The Global Network convenes stakeholders from around the world to improve outcomes for those living with FH and elevated Lp(a). Through visionary, strategic initiatives, the Family Heart Foundation serves as a global resource for patients, healthcare professionals, researchers, and policy makers around the world. The Global Network is the Family Heart Foundation's effort to extend its mission and impact on a broader stage. The Family Heart Foundation drives collaborative projects with the international community including impacted individuals, advocacy organizations outside of the US, clinical experts, scientific societies, and policy leaders to drive the prioritization of inherited lipid disorders as a global health concern. One of the Family Heart Foundation's key Global Network efforts was to establish a collaborative effort to re-engage the World Health Organization ("WHO") to address FH as a public health hazard and to update recommendations from the 1998 WHO Report on FH. This initiative resulted in the FH Global Call to Action, published in Journal of the American Medical Association ("JAMA") Cardiology.Family Heart Advocates for Awareness: The Family Heart Foundation has trained volunteers across the US to represent the Family Heart Foundation and share their stories to increase awareness of genetic drivers of premature cardiovascular disease within the medical community and public at large. Advocates speak about early diagnosis and the life-saving impact of optimal management at medical schools, medical conferences, health fairs, community organizations, media outlets, and congressional offices on Capitol Hill. These volunteers serve as peer supporters. Community Forum: Every year, the Family Heart Foundation convenes FH and now Lp(a) families across the US at Community Forums and provides them with a platform to meet others living with genetic lipid disorders, connect with experts in the field, and learn about how to optimally manage their diagnosis and treatment. The Community Forums address the sense of isolation many feel living with FH, HoFH, and/or elevated Lp(a) and inspire them to get involved with the Family Heart Foundation to improve screening, diagnosis, and daily life for those born at risk of early heart disease and stroke. Advocacy and Public Policy Efforts: Over the last ten years, the Family Heart Foundation has engaged with federal, state, and local elected and appointed officials to influence policy and actions for FH, and in December 2021, expanded this advocacy to include Lp(a). The Family Heart Foundation has an active voice on Capitol Hill, with health technology assessment bodies, the Food and Drug Administration ("FDA"), the Centers for Medicare and Medicaid Services ("CMS"), the Centers for Disease Control and Prevention ("CDC") and the U.S. Preventive Services Task Force to ensure the needs of the FH and elevated Lp(a) population are met. 2824249 5424199 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 24 0 1 17 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 Dan Rader Chair (end Dec.) 1.00 X X 0 0 0 Joshua Knowles Chair 1.00 X X 0 0 0 Seth Baum Vice Chair (start Jan.) 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 438365 0 13734 Keith Ferdinand Board Member (start Jan.) 1.00 X 0 0 0 Stacey Lane Board Member (end Dec.) 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 Catherine Ahmed VP of Policy 40.00 X 141418 0 658 M McGowan CMO 40.00 X 214639 0 16537 Hilliard Paige Chief Innovation Officer 40.00 X 338536 0 24790 Susan Seim Creative Director 40.00 X 117716 0 0 Diane MacDougall VP of Science and Research 40.00 X 174420 0 0 1425094 0 55719 6 0 1 0 Bass Berry & Sims PLC 150 3rd Ave S Nashville TN 37201 Legal Services 384284 Atomo Inc 1603 Falcon Ledge Dr Austin TX 78746 Consulting 360000 Merryman Communications INC 260 Via Buena Ventura Redondo Beach CA 90277 Media Outreach/Advertising 305008 Source Heathcare Analytics LLC 4130 ParkLake Ave Ste 400 Raleigh NC 27612 Lab Data sets 238393 Lighthouse Consulting LLC 9 Pinewood Village Road West Lebanon NH 03784 Contract labor 172427 5 187562 5973051 6160613 Contract fees 900099 318396 318396 318396 31584 31584 Other income 900099 25015 25015 25015 6535608 318396 0 56599 452099 370721 49731 31647 1778121 1430894 318716 28511 105916 83869 19242 2805 213289 168504 39734 5051 48659 38530 8840 1289 377880 254835 123045 104461 104461 429246 412176 6438 10632 768358 746004 19797 2557 99240 47871 44351 7018 27665 2478 25187 11834 6864 3550 1420 344872 318606 12574 13692 533364 519180 557 13627 6556 4916 657 983 103080 72156 15462 15462 Data & Research 936857 936857 Membership/subscription 10109 9518 390 201 Bank charges 9890 9800 90 Registration fees & tax 1004 220 784 6362500 5424199 803316 134985 1765132 1455288 1640720 2312202 0 531161 201942 2553 72219 76431 64631 42029 9032 22602 798771 890893 561 22546 4488377 5313676 489614 321833 65000 791000 0 20691 554614 1133524 X 2329671 788283 1604092 3391869 3933763 4180152 4488377 5313676 173108 73281 0 X 0 1 X 1 0 X 1848898 2147210 3613537 1824933 6160613 15595191 1848898 2147210 3613537 1824933 6160613 15595191 10062195 5532996 6761 25313 32015 31749 31584 127422 8243 13198 300 4366 25015 51122 15773735 5524947 0.35080 0.42810 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 64631 42029 22602 22602 Lease liabilities - operating leases 20691 20691 X 6608889 73281 73281 6535608 0 6535608 6362500 0 6362500 0 6362500 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 101000 0 0 0 0 0 13734 0 452099 0 0 0 Hilliard Paige Chief Innovation Officer 307536 0 31000 0 0 0 0 0 24790 0 363326 0 0 0 M McGowan CMO 198639 0 16000 0 0 0 0 0 16537 0 231176 0 0 0 Diane MacDougall VP of Science and Research 173420 0 1000 0 0 0 0 0 0 0 174420 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, Mary McGowan, & Susan Seim 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 Family Heart Advocates for Awareness CASCADE FH Registry Family Heart Database FIND Lp(a)TM FIND FH Patient, Practitioner, and Payer Lipid Lowering Landscape Analysis Getting On Appropriate Lipid Lowering ("GOAL") Program Care Navigation Center Family Heart Global Summit Global Network Research Partnerships 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.