Family Heart Foundation
2022/23 Impact Report
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A Letter From Our Founder I am excited to share some highlights of the Family Heart Foundation’s work over the last two years. We continue to pursue our mission with the same personal passion and effective pragmatism. We have shined a light on how poorly LDLcholesterol is managed in America and how this lack of urgency leaves those born with familial hypercholesterolemia (FH) most vulnerable. In 2021, we expanded our mission to include elevated lipoprotein(a), also known as Lp(a), another culprit in the progression of heart attacks, strokes, and peripheral artery disease. I was born with both FH and high Lp(a). I have seen the data on the devastating impact of these genetic conditions again and again in our own research and those of our colleagues. I understand the urgent need to screen for these conditions and manage all the risks as soon and as well as possible. I also know how it feels to be afraid, to be disappointed or angry about falling through the cracks of the healthcare system. The last decade has been the golden age of LDL lowering therapies. Today, it’s possible for almost everyone to reach their LDL Safe Zone. And while there are no therapies currently available to treat high Lp(a), there are many promising developments on the horizon. Screening and diagnosis of FH continues to increase, but our research shows that only a small number of U.S. physicians are responsible for half of all Lp(a) testing. Additionally, it is estimated that less than 1-2% of people living with high Lp(a) are aware of it. The Family Heart Foundation is a resource for individuals and families looking for answers about testing, diagnosis, and treating their genetic conditions. Our community also includes clinicians, scientists, and public health professionals who are deeply committed to reducing the burden of cardiovascular disease in the U.S. We provide personalized care navigation services free of charge, produce high quality education webinars, infographics, and live seminars across the country for a variety of stakeholder audiences.
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The work of the Family Heart Foundation is to bridge the gaps in knowledge across medical experts, policy makers, insurance companies, and the public. We offer support that empowers the individual. We provide resources that help them gather information and more importantly translate that information into improved understanding and action. We cultivate the community and empower them to advocate as a group and raise awareness. We produce award-winning awareness campaigns, work with major news outlets, high profile newspapers and magazines to increase understanding and urgency in managing LDL cholesterol and inherited lipid disorders. We bring our data, our lived experiences, and our insistence that we can, and we must do better. As a public charity, we depend on the support of donors small and large to make our work possible. As you read through some of the highlights of our efforts over the past two years, we ask that you please consider making a commitment to this work through a monthly donation. With the support of our community, we continue to help others. With the support of our corporate and individual donors, we continue to conduct innovative research that yields important insights. We are on a mission to improve public health – one human at a time.
Thank you!
Katherine Wilemon Founder and CEO
About the
Family Heart Foundation
®
The Family Heart Foundation is a patient-centered nonprofit organization dedicated to improving the lives of families impacted by familial hypercholesterolemia (FH) and elevated lipoprotein(a), also known as Lp(a). We have a long history and proven track record of collaborative research, passionate advocacy, and educating families about FH and Lp(a). Since our founding in 2011, we have focused on addressing the urgent needs of those living with FH. In 2021, after a decade of success with FH, we began to recognize the increased needs in the elevated Lp(a) community. We expanded our mission, changed our name, and got to work helping families get the timely diagnosis and care they need and deserve. We work with health systems, public health officials, elected representatives, and insurance plans to help them understand FH and high Lp(a). These two inherited lipid disorders affect millions of people around the world every day. We continue to focus on creating and advancing programs to improve the chances for families with FH and high Lp(a). We listen to every phone call, email, and discussion group concern. We are a trusted resource for those looking for information and support on treatment and care options.
Understanding genetic risks and partnering with the right medical team can save lives. This is why we continue to collaborate, educate, advocate, and legislate for better care and protection for the communities we serve. ABOUT FH FH is a common inherited lipid disorder that leads to aggressive and premature cardiovascular disease. For people with FH, genetic mutations make the liver incapable of metabolizing (or removing) excess low-density lipoprotein cholesterol (LDL-C). This results in very high levels throughout life. FH affects 1 in 250 people worldwide. It’s found in women, men, and children of all racial, ethnic, and socioeconomic backgrounds. Approximately 1 in 10 heart attacks of individuals under the age of 50 are caused by FH.
ABOUT ELEVATED LP(a) Elevated Lp(a) is a life-threatening genetic condition that causes premature heart disease, stroke, and aortic stenosis. Individuals with elevated Lp(a) typically reach adult levels by the time they’re five years old. This means, just like with FH, atherosclerosis can begin early in life. For those with high Lp(a) the risk for early heart disease and stroke is roughly 2-4 times higher than the general population.
“We need multi-component, multi-stakeholder strategies, and that’s where the Family Heart Foundation comes in.” — DR. BRIAN MITTMAN Family Heart Foundation, Board Member
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Expanding Our Mission and Population For 10 years, the FH Foundation® directly served the needs of individuals and families living at high risk for heart disease due to both familial hypercholesterolemia (FH) and homozygous familial hypercholesterolemia (HoFH). As the years went on, however, we have increasingly seen the urgent needs of another community living with increased risk of early heart disease and death: the individuals and families living with high lipoprotein(a). That’s why we recently expanded our mission to include this broader population. With this new mission came a new name: the Family Heart Foundation. We continue to help those impacted by FH and HoFH, but we now offer our support, advocacy and research to the high Lp(a) community. These two conditions are both genetic and are asymptomatic until disease has progressed. Research shows 1 in 250 have FH and 1 in 5 have high Lp(a). Many people have both conditions, increasing their risk. We have been a driver of innovation research to improve identification and care of people with these inherited disorders. Our history of success positions us to provide the best education, awareness, advocacy, and support to millions so we can save more families and more hearts.
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Flag Identify Network Deliver (FIND) ™
Flag Identify Network Deliver (FIND) is an innovative machine learning and big data initiative aimed at identifying undiagnosed FH and Lp(a) patients. Despite the risks and number of treatments available – screening, diagnosis, and lipid-lowering treatments are collectively being provided to less than 30% of those that need it. The Family Heart Foundation is the convener of the FIND Collaborative Learning Network (CLN). This program brings together patients, healthcare providers, health systems, and other key experts to to improve care for patients, while leveraging FIND FH machine learning stratigies to identify undiagnosed individuals.
The FIND CLN holds regular learning sessions in five different healthcare systems (OhioHealth, University of Texas Southwestern, Dartmouth Health School of Medicine, University of Pennsylvania Medicine, and Emory Healthcare) to to identify, test and improve strategies to improve care delivery. Through this, we have captured insights and built a toolkit of best practices for the FIND processes. Through the five partner healthcare systems, The Family Heart Foundation is informing and changing how healthcare for lipid management is delivered for over 600 specialists and systems.
Patient, Healthcare Practitioner, and Payer Lipid Lowering Landscape (PPPLLL) Analysis There are many complicated barriers keeping high-risk patients from reaching guidelinerecommended LDL goals. The Family Heart Foundation Patient, Healthcare Practitioner, and Payer Lipid Lowering Landscape (PPPLLL) Analysis aims to identify those barriers and improve access to care.
Identifying barriers to achieving LDL cholesterol goals Real-world data from the Family Heart Database™ in >38 million Americans at high risk of heart disease show:
Using the Family Heart Database along with patient and healthcare provider insights, the PPPLLL Analysis determined the points along the patient journey where targeted interventions could address barriers and access to care. The findings from the PPPLLL analysis were instrumental in the design of the Getting On Appropriate Lipid management (GOAL) program, which is engaging all of the stakeholders in the healthcare ecosystem in an effort to improve awareness, treatment, and control of LDLcholesterol in high-risk Americans. In 2022, our analysis found that most high-risk patients do not receive adequate lipid-lowering therapies, and only a small fraction ever reach guideline-recommended LDL levels. Even those who do reach their LDL goal don’t stay there long.
Patients are receiving suboptimal care. High-risk patients are being severely undertreated. This is not acceptable, and every stakeholder has a critical role in making change. The PPPLLL Analysis will serve as a catalyst for change in policy, treatment, and care of high-risk patients.
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PPPLLL AND THE ATLANTIC As a joint effort with Amgen and the Atlantic, the data from the PPPLLL Analysis was shared. The Family Heart Foundation participated in the the Atlantic’s Health Equity Summit on April 20, 2023 sharing the important data. This event had 65+ in attendance and over 53.5K virtual views. The Atlantic also featured the PPPLLL data along with founder, Katherine Wilemon’s story in the article “the Heart of the Matter” published in May 2023. This piece reached over 18,202 people.
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Getting on Appropriate Lipid Management (GOAL) Program In 2022, the Family Heart Foundation launched the Getting to GOAL (Getting On Appropriate Lipid management) Program in response to the findings from the PPPLLL (Patient, Payer, Practitioner Lipid Lowering Landscape) Analysis. This analysis identified significant shortcomings in LDL management for 38 million high-risk Americans. This study and data from PPPLLL was presented at three scientific meetings in 2023 – the American College of Cardiology (ACC), the Academy of Managed Care Pharmacy (AMCP), and the National Lipid Association (NLA). In brief, the PPPLLL analysis found that fewer than 30% of high-risk individuals have their LDL-controlled and even if a person achieved their LDL target, they remained below their target for a limited duration of time (fewer than 6 months on average). Additionally, use of statins and other lipid-lowering agents (especially in combination with statins) was very limited.
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This study also identified significant disparities in LDL control based on gender, race, income, and education. The GOAL program was launched to engage all stakeholders (patients, payers, practitioners, and policy makers) with a comprehensive educational campaign to improve awareness, treatment, and control of LDL in high-risk Americans.
PATIENTS A new patient-oriented video was released on February 14, 2023. A companion website with tools and resources for patients was launched in early June. Additionally, a new patient tear pad on the importance of getting to the LDL Safe Zone was made available in December 2023. It has been promoted at major medical meetings throughout 2023 as well as online.
PAYERS The Family Heart Foundation presented a poster from the PPPLLL analysis at the Academy of Managed Care Pharmacy (AMCP) Spring meeting in San Antonio, TX. This analysis showed that there was a 49% increase in total cardiovascular events for those people who spend most of their time in the LDL “Danger Zone” versus the “Safe Zone.” Along with this poster presentation, the Family Heart Foundation also held a well-attended educational session during AMCP. Additional educational sessions for the payer community were held at the America’s Health Insurance Plan (AHIP) annual meeting in June and at the Academy of Managed Care Pharmacy (AMCP) Nexus meeting in October. Lastly, a dedicated LDL-C webinar in partnership with AHIP took place on December 15.
PRACTITIONERS The Family Heart Foundation has undertaken several initiatives to raise awareness among health care practitioners (HCPs) focusing on the importance of prioritizing LDL control. First, we developed a new Family Heart booth for use at medical meetings in order to engage HCPs and highlight our various LDL focused patient resources. This booth debuted at the American Society for Preventive Cardiology meeting in June and has been used multiple times over 2023. For Cholesterol Awareness Month in September, we partnered with HCP Live on a program entitled, “New Guidance, New Data, and New Targets for the Management of Hyperlipidemia.” This program was chaired by Dr. Keith Ferdinand and featured Dr. Payal Kohli, Dr. Erin Michos, Dr. Christie Ballantyne, and Family Heart Chief Medical Officer Dr. Mary McGowan. A total of 14 episodes will be released and these programs typically reach over 10,000 HCPs. In the first month that the program was available, over 3,600 HCPs watched the program, which was the best firstmonth performance ever for any HCP Live program.
Additionally, we have partnered with Pri-Med on a series of educational sessions entitled, “Opportunities to Reduce the Rising Tide of Heart Attacks and Strokes through better LDL-C Management.” Two virtual programs have already been completed. We held two inperson programs – one in Tampa and one in Atlanta. A few highlights from the programs:
continue to be distributed in 2024. Additionally, a Congressional Briefing on the importance of LDL and the need to re-establish LDL quality measures was held on Tuesday, October 3, 2024 in Washington, DC, featuring Drs. Keith Ferdinand and Seth Baum from the Family Heart Board of Directors and Ora Williams, a Family Heart Patient Ambassador.
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More than 1,000 HCPs attended
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The Pri-Med Tampa was standing room only with people being turned away at the door
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More than two-thirds of attendees do not see pharmaceutical representatives.
Key advocacy priorities for the Foundation include restoration of LDL quality measures, Pharmacy Benefit Managers (PBM) transparency, and prior authorization reform.
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More than a 70% increase in familiarity with the topic of LDL-C management More than 85% will incorporate the information into clinical practice
Much progress has been made through the GOAL program, and we look forward to continuing and expanding these activities in 2024. The Family Heart Foundation gratefully acknowledges Amgen for their support of GOAL as a Foundation-Level sponsor.
POLICYMAKERS The Family Heart Foundation released a white paper including policy recommendations to improve the awareness, treatment, and control of LDL. This was distributed at key meetings in 2023 and will
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Partnerships in Applied Research and Quality Improvement FEDERALLY FUNDED RESEARCH PARTNERSHIPS The Family Heart Foundation is actively involved in six federally funded research studies with large health systems including
“ I’m not satisfied by writing a paper or getting a grant. I want actual people to benefit from all the great scientific discovery that we have. That is what the Family Heart Foundation is doing, and it’s really incredible to watch.” — DR. RHINAD BAIDAS Care Navigation Center
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Boston Children’s Hospital, Columbia University, University of Pennsylvania, University of Texas Southwestern, and Geisinger. Our work on these grants is extensive including machine learning, data analytics, and direct patient contact. Through these grants we’re learning the best approaches for the diagnosis and treatment of FH. Three of our grants involve cascade family screening, a process where family members of an individual with FH are screened to determine if they too have inherited the disorder. Many of our trained advocates have also participated in these research studies through focus groups and study interviews. In 2022 our work resulted in a total of seven manuscripts and poster presentations. Posters were presented at the National Institutes of Health Conference on the Dissemination and Implementation in Health, The American Heart Association Annual
“ Our family history tells a sad story of untreated FH and elevated Lp(a)... Luckily, I found the Family Heart Foundation, and with it, the support of many others who had had similar experiences.” — KATHY T. Family Heart Ambassador
Scientific Sessions, The National Lipid Association Annual Scientific Sessions, and the National Society of Genetic Counselors. PARTNERSHIP WITH MIDWEST GENETICS NETWORK 5
The Family Heart Foundation worked with the Midwest Genetics Network to develop a continuing medical education and quality improvement program to educate
clinicians around the country on the importance of pediatric lipid screening for FH. Two of our trained advocates are serving as patient advisors on this project. Although the American Academy of Pediatrics recommends universal screening of children for elevated cholesterol and FH, only a small fraction is actually screened. This project aims to change this.
Publishing for Impact The Family Heart Foundation uses its own data sources, including the Family Heart National Database and the CASCADE FH® Registry, to uncover issues in the U.S. health system. However, it isn’t enough to present posters at major scientific meetings and publish articles in scholarly journals. The data we generate is shared with a much wider audience, and the language we use is compelling and accessible to the average person, policy makers, and payers. We bring our data to social, local, and national media outlets.
Genetic Testing for Familial Hypercholesterolemia in Clinical Practice Current Atherosclerosis Reports 2023 | Tricou, E, et al. Optimizing Communications Strategies and Designing a Comprehensive Program to Facilitate Cascade Testing for Familial Hypercholesterolemia Current Atherosclerosis Reports 2023 Patient Experiences Align with the Familial Hypercholesterolemia Global Call to Action American Journal of Preventive Cardiology 2022 | Jones, L, et al.
Characterization of Children with Homozygous Familial Hypercholesterolemia from the CASCADE FH® Registry 2022 | Presented at AAP Using Healthcare Claims Data and Machine Learning to Identify Health Disparities for Individuals with Diagnosed and Undiagnosed Familial Hypercholesterolemia. 2022 | Presented at AHA and WCIRDC Diagnosis of Familial Hypercholesterolemia: A Work in Progress 2022 | Presented at ASCP
Motivating cascade testing for familial hypercholesterolemia: applying the extended parallel process model for clinician communication Translational Behavioral Medicine 2022 | CampbellSalome, G, et al.
Real-World, Observational Study of Elevated Lp(a) and Cardiovascular Events 2022 | Presented at EAS
USPSTF Recommendation on Screening for Lipid Disorders in Children and Adolescents: Letter to the Editor Jama Network 2023
2022 & 2023 POSTERS
Contemporary Homozygous Familial Hypercholesterolemia in the United States: Insights From the CASCADE FH Registry Journal of the American Heart Association 2023 | Cuchel, M, et al.
The Vast Majority of Hypercholesterolemia Patients Never Reach Below LDL-C Thresholds in the 2018 ACC/AHA Guideline 2023 | Presented at NLA and ACC
Engaging Individuals with Familial Hypercholesterolemia and their Families to Design a Direct Contact Program (DCP) to Improve Cascade Testing Uptake 2022 | Presented at NSGC (with IMPACT FH)
2022 & 2023 PUBLICATIONS
Yield of Familial Hypercholesterolemia Genetic and Phenotypic Diagnoses After Electronic Health Record and Genomic Data Screening Journal of the American Heart Association 2023 | Gidding, S, et al.
Lipoprotein(a) Screening Practices in a Large US Healthcare Dataset 2023 | Will be presented at AHA
Higher Cardiovascular Event Rates for Americans Who Do Not Meet 2018 Multidisciplinary Guideline on the Management Of Blood Cholesterol Thresholds 2023 | Presented at NLA and AMCP
Characterization of Lp(a) Measurement In a Large U.S. Health Care Dataset 2023 | Presented at NLA and CMHC
Yield of a Familial Hypercholesterolemia Genetic Diagnosis After Electronic Health Record and Genomic Data Screening 2022 | Presented at AHA (with IMPACT FH)
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CASCADE FH Registry Research ®
The CASCADE FH Registry is celebrating a decade of longitudinal observational research. Since its inception in 2013, the Registry has been committed to collecting important data on the state of FH care in the United States in close collaboration with over 40 lipid specialty clinics. Data on family history, lipid lowering medications, LDL-C levels, and cardiovascular events helps us identify trends in care and areas for improvement. This data has been presented at many medical conferences over the years and has resulted in the publication of over 30 scientific papers, posters, and abstracts in peer reviewed journals. In 2022, a poster on HoFH in children was presented at the American Academy of Pediatrics meeting. A paper describing HoFH diagnosis and treatment patterns among adults and children was published in April 2023 in the Journal of the American Heart Association. One finding from our research is that only children with the most severe HoFH are being
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diagnosed as children, meaning less severely impacted children may not be diagnosed until adulthood. This is too late because by that time they have gone decades without cholesterol lowering therapy. The Family Heart Foundation took this information to the United States Preventive Services Task Force (USPSTF) to urge them to join the
American Academy of Pediatrics in recommending lipid screening in children at the age of 2 if they have a family history of FH or cardiovascular disease along with universal screening of all children between the ages of 9-11. Until now, the USPSTF has resisted making this recommendation.
Data from the Registry provide insight into current trends in FH diagnosis and treatment. Sharing these insights with healthcare providers, policy makers, and the public can improve patient care, guidelines, and FH awareness to create better patient outcomes.
Real individual living with FH
Care Navigation Center The Family Heart Foundation has helped thousands of people over the past 11 years navigate their care. In 2022 we formalized this effort and established our Care Navigation Center to better serve the FH, HoFH, and high Lp(a) communities. Our Care Navigators help individuals, family members, and caregivers at every stage of their journey. The Care Navigation Center helps individuals understand their diagnosis, goals, and treatment options. We connect individuals to specialists and navigate insurance issues. We help people share their diagnosis with family members and understand lipid and genetic testing results. We listen to our communities’ needs while developing new resources based on their questions. The Care Navigation Center is the hub for family screening efforts conducted as part of our research grants with Penn Medicine and University of Texas Southwestern. Most importantly, we connect people to the broader FH and Lp(a) community, so they feel
less alone. People make decisions about how to manage their health every day, not only when they see their healthcare provider. The Family Heart Foundation is here for our community every day. No matter the issue, big or small, our Care Navigators can be reached by phone, text, email, or through the Care Navigation Center page on our website to get the help they need.
“The Family Heart Foundation has armed us with knowledge and a tribe and taken the fear out of this lifelong journey. Forever grateful! — ELAINE C. Family Heart Community Member
“With the Family Heart Foundation, we can get educated and connect with others around the world, giving us scientific information, strength in numbers, a voice and most of all— support—when we need it most.” — EILEEN K. Family Heart Ambassador
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Community in Action The Family Heart Foundation is a true partnership of individuals and families impacted by FH and high Lp(a), and the healthcare professionals who diagnose and treat them. Together, we are raising awareness, driving improved diagnosis, making sure individuals know their treatment options, alerting the community to clinical trial opportunities, and working to impact public policy. The Family Heart Foundation’s approach to all we do includes bringing together data, medical expertise, and the patient perspective to tell the whole story and make a lasting impact. The reach of the Family Heart Foundation Community in Action program can be felt all year long. Every day, the Family Heart Team and our Family Heart Ambassadors answer questions by phone, email, text, and even on social media. We are there for these people every day, connecting them with experts, education materials, and to each other for community support.
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“The Family Heart Foundation and community has become an extension of our family. We all work together to raise awareness and save not just individuals, but families.” — LISA R. Family Heart Ambassador
Raising Awareness The Family Heart Foundation established FH Awareness Day in 2012 and Lp(a) Awareness Day in 2022 to help raise awareness of these inherited disorders and activate the community. Through national and local media, as well as social media engagement, we drew attention to these important disorders and encourage everyone to join the movement.
Lp(a) AWARENESS DAY
FH AWARENESS DAY
March 24, Lp(a) Awareness Day in 2022 and 2023 the hashtag #KnowLpa reached over
September 24, FH Awareness Day in 2022 and 2023 the hashtag #KnowFH reached over
20
19
MILLION PEOPLE
MILLION PEOPLE
The satellite media tours in 2022 and 2023 for Lp(a) Awareness Day reached more than
The satellite media tours in 2022 and 2023 for Cholesterol Education Month reached more than
147.4
129.2
MILLION PEOPLE
MILLION PEOPLE
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2022 Campaign: Runs in the family is not a diagnosis The Family Heart Campaign aims to drive urgency to address “family heart disease” and engage individuals who may have a genetic lipid disorder but don’t know it. The theme of the 2022 Family Heart Campaign was “’Runs in the family’ is not a diagnosis.” With this message we aimed to activate individuals to investigate the reasons for early heart disease and stroke in their families. We encouraged conversation and educated communities on how elevated LDL and Lp(a) can increase the risk of cardiovascular disease and what can be done about it. We launched MoreFamiliesMoreHearts. org, drove social media engagement with paid and organic ads, and our founder participated in a satellite media tour reaching out to local and national media outlets.
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PRISM AWARD: Los Angeles region’s premier awards program recognizing excellence in public relations strategic campaigns, tactical programs, & professional merit.
CHARLOTTE
LIZ
ALLY
PAUL
RUTH
DAVID
2023 Campaign: Getting to Goal In 2022, the Family Heart Foundation launched the Getting to GOAL (Getting On Appropriate Lipid management) Program in response to the 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.” That’s why in 2023, the “Safe Zone” campaign was launched. 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.
Featured Story with Family Heart Advocate Visitors: 163.1M+ Online Placement: 1,082
“I can’t do anything about my family history. But what I can do is take the steps to control my LDL cholesterol. I can tell my story with the hope of saving others from the challenges I faced, and encourage them to get in their Safe Zone.” — ORA W. Family Heart Ambassador
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2023 Family Heart Global Summit The 2023 Family Heart Global Summit was the first year the Summit has been held since the mission for the Family Heart Foundation expanded in 2021. It is the only conference solely dedicated to aligning stakeholders and catalyzing solutions to reduce the burden of cardiovascular disease in people with inherited lipid disorders, including familial hypercholesterolemia, homozygous familial hypercholesterolemia, and high lipoprotein(a). We convened over 250 people, including academia, industry, public health stakeholders, and individuals living with inherited lipid disorders. Together we engaged in didactic learning, expert panel discussions, and audience participation “looking through a wider lens” to discuss practical solutions to bridging the gaps of a broken healthcare system. We asked the questions: Why are some innovations not quickly adopted? Why are the adoptions slower for minority populations? How do we think holistically about these problems?
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2022 - 2023 Financial Overview Your donations and sponsorships help us actively work with health systems, public health agencies, medical professionals, and individuals with FH and/or high Lp(a) to bring about meaningful and measurable improvements in care for families with FH and/ or high Lp(a). We do all of this while being good stewards of your financial support. The Family Heart Foundation continues to be impactful in 2022 and 2023 with more than 81.6% of our funding going toward programs or services aimed at raising awareness of FH and high Lp(a), and saving the lives of those affected by these common genetic disorders. The funds raised support our important research, advocacy, and education efforts.
46.1%
RESEARCH
36.6%
EDUCATION
17.3%
ADVOCACY
81.6%
OF BUDGET GOES DIRECTLY TO PROGRAMS
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The Family Heart Foundation’s critical work in 2022 and 2023 was made possible by the contributions of individual donors and corporate sponsors who believe in our mission. Thank you! Corporate Sponsors Corporate Advisory Council Champion Member Amgen, Novartis, Regeneron, Verve Partner Member Amryt, Kaneka, Lilly Supporting Member Arrowhead FH Community in Action Premium Level Amgen Sponsor Level Esperion, Kaneka
Individual Donors FIND FH Premium Plus Level Amgen FIND LP(a) Premium Plus Level Novartis Family Heart Campaign Premium Level Amgen, Regeneron
Champions Over $100,000 Stacey & Curtis Lane Patrons Over $10,000 Robin Neustein Daniel Rader Harold Roberts Dave Robinson The Warburg Pincus Foundation
HoFH Community Outreach, Education, and Support Presenting Level Sponsor Regeneron Program Level Sponor Amryt
Benefactors Over $1,000 AAE Family Fund R & T Abatecola Sidney Barr (Sperling-Barr Cheritable Giving Fund) Seth Baum J Sue Bayer George Blike Barry Brooks Mary Card Christie Anne Coonrod Lisa Cooper Thomas Davis Matej Drev Joshua Farnell Ewa Folta-Stogniew Dave Fortunato Claire Grobler Adina S. Gutstein Nancy & William Howard Chip & Sheryl Kaye Jill T. Kurtz Mary P. McGowan Judith Moritz Kelly Myers Lisa Nelson Hillard Paige Jr Scott Radabaugh Michael Robinson Stanley Trela Phil Trem Katherine and Larry Wilemon
HoFH Rare Disease Day Sponsor Regeneron
Partners Over $250 Cat Davis Ahmed Shaikh Ahmed
Lp(a) Community in Action Inaugural Foundation Level Amgen, Norvartis Sponsor Level Kaneka Community Level Silence CASCADE FH Registry Sponsor Level Regeneron Family Heart Global Summit Foundation Level Amgen, Novartis, Regeneron Partner Level Verve Premier Level Amryt Supporting Level Kaneka
Care Navivation Center Champion Amgen, Regeneron PPPLLL Foundation Partners Amgen GOAL Foundation Partners Amgen LDL-C Awareness Campaign SMT Foundation Level Amgen Sponsor Level Esperion, Regeneron Supporter Level Novartis
Michael Allard Nancy Blanchard Jeanne Boedeker Carmel Briggs Jennifer Card Ramona Cass Julie Clary Jane Cohen Dan Coppens (Dan Coppens & Po-Ching Tsoi Charitable Fund) Marianne Cozzolino Susan Dole April Donelson Marsha Epstein Susan Flores Lori Foley Helen and Steve Fortunato Theresa Garcia Janis Goodman Abrams Susan Hedberg Linda Hemphill Javier Henao Bruce Henderson Karla Henning Linda & Richard Hyson Thomas Flanagan Allison Jamison John Jensen Becky Kellner Eileen Kent Iris Kindt Josh Knowles Neil Kuehn Carol Kulcher Christine Layton Julianne Mahoney David Maron Theresa Mastropietro Ben Mays Cheryl McClendon Elizabeth Merryman Brian Mittman Siobhan Moran Charlotte Muller Philip Nowiki Donna Page Janet Phillips
Jeanne Polries Samuel E. Riffle Courtney Riley Charles Robinson Sandra Robinson Andrew & Stacy Rosen Kari Roundy Rocsana Saddigh Jean Sheridan Maria Sophocles Charles Strause Terry Sturke Fern Taylor Gail Titus Dawn Tvrdy Edmond Valencia Sylvia Washington Barry Weisberg Gregory Wilemon Larry Wilemon Ora Williams Brandon Wilson Diana Wood Candice Wroe Patricia Young Susan Zelt Supporters Over $100 Janis Abrams Anita Allardice Karen Allred Mackenzie Ames Shannon Anderson-Finch Marianne Andreach Erica Anthony Betsy Green-Baker Mackenzie Bartlett Jeff Bastien Harriet Beasley Kristin Bennet Richard Beyer Melissa Boedeker Ashleigh Boedeker Debbit Bohn Brittany Bostock Susan Bostock Patrick Brady
Rebecca Braida Warren Brandwine Judy Brassfield Lynne Braun Kimberly Brown Jessey Bryan Nicholas Bryan Isabelle Bryan Carolyn Burns Jill Button Dale Carey Carol & Bruce Carol Phil Case Louise Classen Joan Cloit-Gross Kristen Collosso Lisa Colone Tracey Cordeiro Scott Cory Erika Couture Jeanine Cunningham Denis Davey Thomas Dayspring Pamela Deas Georgia Demarest Marcia Demczar Heather DeShon Ngoc Quang Thao Dinh Lynne Dodge Robin Downing William Dubinsky Laurence Durack Nancy Duaes Julie Eastwood Elaine Eaton Theresa Feisley Julie Fregosi Rebecca Garcia Suzanne Galvin Sharon Emmons Courtney Gardner Barry Gibson Emily Gilman Bruce Gordon Viki Graff Vaughn Graham
Individual Donors continued Patricia Green Shaun Grewal Erik Hagen Tom Hampshire Scott Harpe Nancy Harris David Harrison Janell Harshbarger Laura Hayman Kathleen Healy Bruce Henderson Colleen & Jim Higgins Grace Hottinger Daniel Huitron Mary Hunziker Kate Karamouzis Jonathan Karas Jay Kennelly Alana Kennon Eileen Kent Nina Kjellson William Klein Brian Kopinsky Sarina Kopinsky Laurel Land Nancy Lemcke Nancy & Howard Lemcke Patricia Lucherini Michele Magness Aletha Maki Marilynn Mann Paul Mann Kimberly Manning Allison Mast Sherilyn Matthews Donna McGrath Sean McGrath Vincent Mclaughlin James and Diana McPhai Susan Mikolaitis l Michelle Million Morgan Investment Trust Kathleen Morris Amanda Mudd Julia Muller Brigette Muller Gretchen Muller Ashley Nagy Tiffany Narvaez Jauregui Janet Newman
Adina Gutstein & Roni Nissan Sarah Nill Kathleen Noll Kenneth Novak Heidi Olguin John Ovanessian Alicia Pacey Kris Pantelid Christina Pare William Parry William Pasternak Lauren Payne Kathryn & Neil Pearson Jessica Pittman Lauren Puliafico Stephanie Quinn Cynthia Racicot Rebecca Radabaugh JJ Ramsey Rachel Rand Tryphena Reidy Kathleen Richburg Susan Riley Emily Riley Francine Roy Melvyn Rubenfire McGuirk Sarah Joyce Sasaki Peter Sbardelli Jennifer Scannell Dinah Scannell Nancy Sepe Melissa Serum Heather Shasa Catherine Shepard John Siler Deb Silvers Benjamin Spera Michal Staninec (Staninec Charitable Foundation) Eleanor M Stephens Jennifer Stephens Rob Stillman Nannette Stonebraker William Sullivan Thomas Szold Jane Temple Ngoc Quang Thao Natalie Thibodeau Barbara J. Walker
Casey Walsh Karen Warfel Sue Warner Bonnie Wells Alina Wilson Linda Wisthuff Katie Yazbeck William Burke & Joyce Zeiner Friends Over $10 Diane Aceves Riyadh Al Basem Al Baldawi Samer Al Baldawi Ghassan Al Khedery Zaid Alazzawi Timothy Ames John Anthony Catherine Archer Angie Arizona Jenni Arnett Southerington Kate Aymong Jerry Backe Grace Badiali Eileen Bahr Dawne Barnes Eileen Bass Katie Beaudin Kirsten Bent Natalie Bier Patience Biesiot Susan Biesiot Evelyn Blinn Karen Boguzewski Margaret Borden Monique Botros Desiree Bourassa Lori Boyle Suzel Bozada-Deas Jill Braverman Kristen Brouker-Botelho Jim Burgan Sharon Burgess Sarah Butters Jacki Byers Quinn Jami Cadman Rebecca Callahan David Carmel Lindsay Carrick Kelly Carroll
Yvonne Cartelli Jane Carter Randi Cerini Patty Chase Mikel Chavez Lim Chee Chiaw Thomas Chew Susan Clark Tiffany Clayton Martha Coleman Jacqueline Coogan Jesse Copeland Lisa Copley Aaron Cortes Kathleen Coughlin Krista Coulter Susan Coveney Kimesha Crandon Linda Craven Jason Crompton James Crooks Kathryn Crowley Audrey Cunningham Crutchfield P.H. Custance Collese Dahlberg Linda Davey Tara Davey Melissa Delaney Emily Demczar Denise Dempsey Holly Dillon Janice Dooner Jean Dooner Mara Dorff Kimberly Duncan Laurence Durack Rhiannon Eades Rebecca Elmo Rachel Elmore Ann Marie Erickson Liliana Esposito Will Estell Barb Estoos Shannon Fabricant Sally Fales Brittany Fantozzi Brendan Fennessy Rodrigo Frenandez Meaghan Fishbone
Breanne Flagg Merry Fleishman Chandra Flett Careen Floyd Rachel Franco Yehuda Friedman Beverly Fusco Stephanie James Gee Paul Gibson Claudia Gibson Ann Gill Adrienne Gold John Goolsby Atlas Gorell Cindy Greiner Richard Guatelli Debbie Guatelli-Steinberg David Gutstein Joan Haley Beth Halley Michael Hammerschmidt Donna Hansen Akima Harrigan Laura Hawkins Linda Haynes Katie Hegeman Scott Heiart Bonnie Heidorn Guy Helou Mark Herrero Cynthia Hibler Sheila Himes Courtney Howard Dorris Hug Daniel Hug Katelyn Humphrey Steve Humphrey Amy Hurd Brian Ingerwersen Ryan Iverson Jennifer Jahner Gabrielle James Joanna Jamison Hudson Jamison Betty Jean Jaskoviak Ferris Jean Ellen Jenkins Linda Johnson Beth Jung Amy Kalb
Megan Kalwick Paul Keefer Kristopher Keller Alice Kemp Ayesha Khan Bailey King Mandy Lacey Nicole LaConte Linda Landis Lori Larson Penny Lawson Seanie Leavitt Kim Leavitt Alexis Leondis Margaret Leonard-Clarke Kathleen Levine Kristen Lindblad Vijay Lingineni Besty Loeb Bruce Long Cathy Lopez Bonnie Luongo Brenda Lynn Diane Macdougall Charlie Macphee Donna Marie Ashley Martin Larry Mathews Marilyn Mays Ali Mazzola Robin Mazzolla Sheila McElhearn Mimi McGovern Christine McGowan Rosalind McKenna Vincent Mclaughlin Rachel Meinel Oneida Mendez-Laws Liliane Merubia Mark Messinger Kaitlyn Meurin Larissa Mikiska Susan Mikolaitis Beverly Miller Jerney Miller Rebecca Moore Danielle Moore Justine Moran Ross Morgan Paul Moriarty
FAMILY HEART FOUNDATION | 20
Real individual living with high Lp(a)
Individual Donors continued Carolyn Morowski David Murphy Kristi Murrin Terry Newman Michael Nicholas Lyndsay Norris Jamie Nosek Melissa O’toole Funke Oladele Freddia Ortega Jessica Osborn Jill Overholt Sarah Owen Trish Padley Priya B. Pattada Anita Polli Hanah Polotsky Erin Polries Mary Joe Popp Sara Preisendanz Denise Provenza Jennifer Putibet Cathy Radvansky Martin Kin Range Lisa Rego June Reinertsen William Reynolds Megan Riley Brendan Riley Judy Roberson Crystal Robert Donald Roberts Joanne Roliff Danielle Ruiz Jane S. Reiko Sakai Nancy Sayre-Harris Nicholas Schatte Krista Schloer Jake Seiler Susan Marie Seim Paul Sekhri Karen Shenk-Morgan Suzanne Shepard Kristen Sherwin Michael & Mary Skerry Rachel Skonecki Jenny Southerington Rachael Steensma
21 | FAMILY HEART FOUNDATION
Erik Stern Sue Anderson Straw Lynn Sutherland Alan E. Sullentrop Barbara Taylor Marlene Tayler Mason Scott Tene Sandy Tibor Gail Titus Courtney Trainer Kathy Urquhart Kate Van Liere Ronica VanGelder Cecilie & David Vernon Joe & Judy Vetrano William Ward Carol Ward Sylvia Washington Dana Waters Linda Weber Gina Welch Cecilia Wendler Sarah Werman Jane Wheeler Lynn Williams Madelene Williams Marno Wilson Christopher Winn Joshua Yee Jillian Yonker Family Heart Fundraisers Cat Davis Ahmed Mackenzie Ames Sue Ault Jenna Athanasopoulos Lynne Braun Isabelle Bryan Carolyn Burns Julie Clary Kate Davey Marcia Demczar Molly Emrich Mark Fielding Theresa Garcia Leslie Gregory Adina S Gutstein Nancy L Harris Melissa Harrison
Nellie Henley Lori Herrera Emily Hug Daniel Huitron Allison Jamison John Jensen Joshua Knowles Mandy Lacey Aletha Maki Julie Matthews Ally Polries Mast Mary McGowan Jen McNutt Jenn Miller Betty Jo Minardi Jessica Moy Charlotte Muller Pamela Murray Kathleen Noll Heidi Olguin Danielle Page Hilliard Paige Jr Erin Peiffer Sydney Phillips Jessica Pittman Ashley Pratt Kimberlee Price Courtney Riley Susan Riley Kate Robinson Ronica’s Custom Creations VanGelder Heather Shasa Felissa Szold Brenna Thibodeau Katherine Thomas Liz Thomson Gail Titus Susan Ward Jennifer Warner Sylvia Washington Kasey Williams Brandon Wilson
“When I look at the Family Heart Foundation, my fellow Ambassadors, and when I talk to my doctors and others in the lipid field, and seeing everyone’s enthusiasm and drive to find solutions – it all gives me hope.” — JENNIFER W. Family Heart Ambassador
Boldly Into the Future… After reviewing our 2022/2023 Impact report, we hope you will agree that it has been a busy and productive period for the team at the Family Heart Foundation and we are even more excited about what lies ahead in 2024. We will celebrate the 10-year anniversary of the landmark FIND FH program and will be full speed ahead with the launch of FIND Lp(a) at 5-6 major health systems around the US. Family Heart Foundation research has demonstrated that less than 2% of people with elevated Lp(a) have been identified and so there is much work to be done in this space. To further improve awareness and screening for lipoprotein(a), we will be launching a bold new initiative entitled AW(a)RE, or Awareness of Lp(a) With Action, Reliable screening and Education. The purpose of this new program will be to engage all stakeholders in the healthcare ecosystem (healthcare practitioners, payers, patients, and policy makers) in an effort to raise awareness, provide education, and improve screening and diagnosis rates for the 20% of Americans who have an abnormally high level of lipoprotein(a). The Family Heart Foundation will continue to demonstrate its leadership with another new initiative in 2024 entitled LEAD or Leveraging Evidence And Data. Through LEAD, we will assemble a multi-disciplinary group of experts to evaluate the available evidence and develop clinical practice recommendations for the Family Heart Foundation related to three important but controversial topics in healthcare – pediatric
cholesterol screening, Lp(a) screening, and LDLcholesterol treatment goals. In Q1 2024, we will be bringing all our Family Heart Ambassadors together for training, engagement, and education as we launch the Community Activation program to harness the deep commitment of our 200+ Ambassadors to effect positive change for people with FH and elevated Lp(a). We will also continue to build on the strong momentum we established in 2023 with the GOAL program (to drive improvements in awareness, treatment, and control of LDL-C) and our Care Navigation center, which offers in-depth patient support free of charge. We supported over 1000 patients through our Care Navigation center in 2023 and are looking to expand our impact in 2024. Finally, our 2024 Family Heart Global Summit will be returning to the great city of Dallas, Texas from September 22-24, 2024. This will be our 10th annual Global Summit and we are especially excited that it will be overlapping with FH Awareness Day on September 24 – what a wonderful way to wrap up this signature event! As you can see, the Family Heart Foundation team is thinking big in 2024 and we hope that we can count on your continued support as we strive to fulfill our mission of saving generations of families from heart disease through timely identification and improved care of FH and elevated Lp(a).
FAMILY HEART FOUNDATION | 22
Board of Directors Daniel J. Rader, MD Chair of the Board Chief Scientific Advisor Joshua W. Knowles, MD, PhD Vice Chair of the Board Chief Research Advisor
Stacey R. Lane, JD, MBE Board Member Courtney Riley, MD Board Member
Allison Jamison, MBA Treasurer
Brian Mittman, PhD Board Member
Seth Baum, MD Board Member
Katherine A. Wilemon Founder & CEO
Scientific Advisory Board for Familial Hypercholesterolemia
Scientific Advisory Board for Lipoprotein(a)
Zahid Ahmad, MD UT Southwestern Medical Center
Eric Brandt, MD University of Michigan Institute for Healthcare Policy & Innovation
Christie Ballantyne, MD Baylor College of Medicine Linda Hemphill, MD Massachusetts General Hospital Lisa Hudgins, MD Weill Cornell Medical College Joshua W. Knowles, MD, PhD Stanford University & Family Heart Foundation Mary P. McGowan, MD Dartmouth Hitchcock Heart & Vascular Center & Family Heart Foundation Amy Peterson, MD Univ. of Wisconsin School of Medicine and Public Health
Family Heart Foundation 5548 First Coast Hwy, Suite 204 Fernandina Beach, FL 32034 (844) 434-6334 info@FamilyHeart.org | www.FamilyHeart.org
Keith Ferdinand, MD Board Member
Daniel J. Rader, MD UPENN Perelman School of Medicine & Family Heart Foundation Michael D. Shapiro, DO Wake Forest School of Medicine Amy Curry Sturm, MS, LGC Geisinger Clinic
Seth Baum, MD Excel Medical Clinical Trials Henry Ginsberg, MD Columbia University Irving Medical Center Abha Khandelwal, MD Stanford University Mary P. McGowan, MD Dartmouth Hitchcock Heart & Vascular Center & Family Heart Foundation Patrick Moriarty, MD Kansas University Medical Center Gissette Reyes-Soffer, MD Columbia University Irving Medical Center Anne Tybjærg-Hansen, MD University of Copenhagen, Copenhagen, Denmark Calvin Yeang, MD UC San Diego Health