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20 25Global Summit Catalyzing Collective Action for Lp(a) & FH: Connecting Individuals, Clinicians and Communities Atlanta, GA

Catalyzing Collective Action for Lp(a) & FH: Connecting Individuals, Clinicians and Communities 02

Letter from our Founder

About the Family Heart Foundation

Our Mission

Summit Co-Chairs and Co-Hosts

Summit Agenda

Sponsors for the 2025 Family Heart Global Summit®

11 Years of Family Heart Global Summit

2025 Pioneer Award and Keynote Speaker: Dr. Sotirios (Sam) Tsimikas

Legends in Cardiovascular Prevention: Looking Back and Moving Forward

2025 Family Heart Foundation Initiatives

Family Heart Foundation Team

Family Heart Foundation Board of Directors

Timeline

Driving Research

Family Heart Foundation Research Publications

Family Heart Foundation Research Abstracts

FIND FH® Articles and Abstracts

Lipoprotein(a) Research

Homozygous Familial Hypercholesterolemia in the U.S.

Lp(a) & Cardiovascular Risk: New Insights from Real-World Data

Research: LDL Treatment Trends from 2014-2023 in 3 Million US Individuals with ASCVD

Access to Prescribed PCSK9 Inhibitors Remains a Significant Barrier

Familial Hypercholesterolemia Global Impact

In the News

Family Heart Community Activation

Lp(a) Community Connect

Annual Family Heart Ambassador Training

Walk to Save More Hearts

FH and Lp(a) Awareness Day

LEAD for Pediatric Cholesterol Screening Initiative

CASCADE FH® Registry Site Map

GOAL Program: Activities, Payer Report Card, and LDL Safe Zone™

Lp(a) AW(a)RE™

Cholesterol Connect™

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Care Navigation

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Flag Identify Network Deliver™ (FIND): FIND FH and FIND Lp(a)®

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2025 Family Heart Global Summit Speaker Biographies

2025 FAMILY HEART GLOBAL SUMMIT |

Letter from our Founder

Welcome to the 11th annual Family Heart Global Summit®, Catalyzing Collective Action for Lp(a) & FH: Connecting Individuals, Clinicians and Communities. It is a privilege to bring together leaders from cardiology, genetics, and public health with individuals and families impacted by familial hypercholesterolemia and elevated lipoprotein(a) to focus on persistent problems, big ideas, and actionable solutions. This year we pay tribute to four legends in cardiovascular prevention: W. Virgil Brown, MD, an architect of modern lipidology; Anne Tybjærg-Hansen, MD, DMSc, a trailblazer in understanding the intersection of genetics and heart disease and using big data; Nanette K. Wenger, MD, a crusader regarding the need to understand cardiovascular disease in women; and Richard Allen Williams, MD, a national champion for health equity in the practice and application of medicine and cardiology. These visionaries will share their personal stories of ushering in new ideas and their hopes for future advances. Our keynote address will be given by Dr. Sotirios (Sam) Tsimikas on lipoprotein(a) as a driver of cardiovascular disease. We are also thrilled to honor Dr. Tsimikas with the 2025 Family Heart Foundation Pioneer Award in recognition of his contributions to cardiovascular medicine and his groundbreaking work in lipoprotein(a). During our time together, we will think holistically about the healthcare ecosystem’s response to cardiovascular disease, the roles we all play, and how our success or failure affects millions of lives. With a growing list of therapeutic breakthroughs and more in the pipeline, as well as our ability to leverage imagining and perform less invasive interventions, our toughest challenges now revolve around “simple” tasks such as screening, diagnosis, and timely management of risk factors. The truth is that we need to collectively address the tricky business of aligning incentives on behalf of the public and in pursuit of prevention. The ethos of the Family Heart Foundation is “all teach, all learn.” We are so grateful to each of you for stepping forward and participating in the Global Summit, and most of all for joining us in our mission to raise awareness and save lives.

Katherine A. Wilemon Founder & CEO

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Family Heart Global Summit COLLABORATING FOR IMPACT

2025 FAMILY HEART GLOBAL SUMMIT |

About

INSERT TEAM FLORIDA IMAGE HERE

Saving more families, more hearts. For the last 13 years the Family Heart Founda-

search shows that 1 in 250 adults and children

tion, formerly known as the Familial Hypercho-

have FH, and 1 in 5 have elevated Lp(a). Many

lesterolemia Foundation (FH Foundation), has

people have both conditions, compounding

directly served the needs of individuals and fam-

their risk.

ilies at high risk for heart disease due to familial hypercholesterolemia (FH), including heterozygous FH and homozygous FH, the rare and most severe form of FH.

We have extensively published original, innovative research from our Family Heart Database® and CASCADE FH® Registry to improve identification and treatment of people with these inher-

In recent years, we have increasingly addressed

ited lipid disorders. Our experience and exper-

the needs of those with elevated lipoprotein(a),

tise in this field positions us to understand key

also known as Lp(a). After a decade of success

audiences. We are able to provide education,

as the FH Foundation, we expanded our mis-

awareness, advocacy, and support to millions

sion and changed our name to the Family Heart

of more families at risk. In addition to this, we

Foundation. Our expanded mission continues

engage extensively on policy issues related to

to help those impacted by FH, and also aims

pediatric screening, prior authorization reform,

to help a broader population at risk for heart

Pharmacy Benefit Manager transparency, and

disease and stroke due to elevated Lp(a). These

quality measures.

two conditions, FH and high Lp(a), have much in common: both are genetic disorders, and can cause early cardiovascular disease, yet both are asymptomatic until disease has progressed. Lp(a) and FH are addressed by the incredible network of specialists the Foundation has had the honor to work with over the past decade. Re4 | 2025 FAMILY HEART GLOBAL SUMMIT

The Family Heart Foundation is committed to continuing our pioneering work in the application of real-world data, patient-driven advocacy, and multi-stakeholder education to help prevent heart attacks and strokes caused by FH and high Lp(a).

Mission

Our Mission The mission of the Family Heart Foundation is to save generations of families from heart disease and stroke through timely identification and improved care of familial hypercholesterolemia (FH) and elevated lipoprotein(a). Through research, advocacy, and education, we drive change and empower families to navigate their own health.

More Education. More Research. More Advocacy. Global FH and Lp(a) Awareness Days reach millions of people each year.

Family Heart Foundation has over 650 healthcare providers from 40 countries on our Specialist Map.

Journal Journal

Family Heart Foundation has published our research in 56 scientific journal articles in the last 13 years.

Over 28,000 individuals are part of our social media and digital communities.

2025 FAMILY HEART GLOBAL SUMMIT |

Atlanta, GA | September 20 – 21, 2025

Catalyzing Collective Action for Lp(a) & FH: Connecting Individuals, Clinicians and Communities The Family Heart Global Summit® 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). The meeting unites mission-aligned people, convenes multidisciplinary professionals, including academia, industry, public health stakeholders, as well as individuals living with inherited lipid disorders to provide engagement through didactic learning, expert panel discussions, and audience participation.

OUR COLLECTIVE MISSION Lead scientific advancements in understanding FH and Lp(a)

Identify and engage individuals and families impacted by FH and high Lp(a)

Influence economic and public policies to optimize care for individuals with FH and high Lp(a)

Unite as a global community to drive improved care & outcomes for individuals & families impacted by FH and high Lp(a)

CO-CHAIRS

Børge Nordestgaard, MD, DMSc Professor for Department of Clinical Medicine University of Copenhagen Chief Physician, Dept. Clinical Biochemistry Herlev and Gentofte Hospital Copenhagen University Hospital

Joshua W. Knowles, MD, PhD Associate Professor of Medicine Stanford University Medical Center Former Chairman of the Board Family Heart Foundation

CO-HOSTS

Seth J. Baum, MD Chief Medical Officer Flourish Research

Laurence S. Sperling, MD Chief Medical Officer Family Heart Foundation

Katherine A. Wilemon Founder and CEO Family Heart Foundation

Chairman of the Board Family Heart Foundation

Katz Professor in Preventive Cardiology Founder of Emory Center for Heart Disease Prevention

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Catalyzing Collective Action for Lp(a) & FH: Connecting Individuals, Clinicians and Communities September 20 & 21 | Atlanta, GA

Saturday, September 20:

AGENDA

Opening Ceremony (Lullwater Ballroom)

1:00 pm

The Power of Collective Action Co-Hosts: Seth J. Baum, MD, Laurence S. Sperling, MD and Katherine Wilemon Co-Chairs: Børge Nordestgaard, MD DMSc and Joshua W. Knowles, MD, PhD

Session 1 Familial Hypercholesterolemia – From Breakthroughs to Gaps

1:05 pm

The Lived Experience Across Generations (HoFH) Allison Jamison, MBA and Family

Women with Familial Hypercholesterolemia Kirsten Bjørklund Holven, PhD

FH in Denmark – 44 Years of Improvement Børge Nordestgaard, MD, DMSc

If I have FH, & Live Healthily, Do I Need Treatment? Eric Sijbrands, MD, PhD

Novel Treatments, New Hope Frederick Raal, MMED, PhD, DSC

Hope for All Joshua W. Knowles, MD, PhD

Roundtable Dialogue BREAK (Garden Overlook)

2:15 pm

Session 2 Lipoprotein(a) in the Spotlight and Pioneer Award

2:30 pm

The Lived Experience Nikita Wilburn, MS, BSN, Family Heart Ambassador

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Lp(a) and Recurrent Events Across Populations Anne Tybjærg-Hansen, MD, DMSc and Diane MacDougall, MS

Opening Keynote Address & Pioneer Award: Introduction & Pioneer Award Presentation Seth J. Baum, MD and Katherine Wilemon

Family Heart Pioneer Award and Keynote Lecture Sotirios "Sam" Tsimikas, MD

Roundtable Dialogue Day 1 Closing and Group Picture

4:30 pm

Opening Reception (Silverbell Pavillion)

5:00 pm

Sunday, September 21: Family Heart Global Summit – Day 2 Breakfast (Main Dining Room)

7:30 am

Welcome (Lullwater Ballroom) Opening Remarks

8:30 am

Co-Chairs: Børge Nordestgaard, MD, DMSc and Joshua W. Knowles, MD, PhD

The Lived Experience Chuck Lane, DC, Family Heart Ambassador

The Future of Lp(a) Lowering Steven E. Nissen, MD

Session 3 Legends in CVD Prevention - Looking Back and Moving Forward

9:00 am

Setting the Stage, Introductions Børge Nordestgaard, MD, DMSc

W. Virgil Brown, MD Nanette K. Wenger, MD Anne Tybjærg-Hansen, MD, DMSc Richard Allen Williams, MD Roundtable Diaglogue BREAK (Garden Overlook)

10:15 am

2025 FAMILY HEART GLOBAL SUMMIT |

Session 4 Global Guidelines - Working Together to Reduce ASCVD

10:35 am

The Unmet Need - The Ineffective State of LDL-C Control and Low Use of Combination Therapy Pamela B. Morris, MD

Europe Jeanine Roeters van Lennep, MD, PhD

United States Roger S. Blumenthal, MD

India Raman Puri, MD, DM

A Simplified Clincal Approach Yehuda Handelsman, MD

Roundtable Dialogue LUNCH (Main Dining Room)

Session 5 Prevention Begins with Pediatrics & Primary Care

12:00 pm 1:30 pm

The Lived Experience Traci Pine, Family Heart Ambassador

LEAD Pediatrics Stephen R. Daniels, MD, PhD, MPH

Newborn Screening Amy Peterson, MD, MS

Rural and Minority Cardiovascular Health Melvin R. Echols, MD

It Takes a Team in Primary Care Viet Le, DMSc, PA-C

Roundtable Dialogue BREAK (Garden Overlook)

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2:40 pm

Session 6 Possibilities and Solutions - Paving the Way to a Better Future

3:00 pm

The Lived Experience James "Joe" Edwards, Sr., MBA

FINDing Lp(a) and FH, The Flag, Identify, Network, Deliver® Initiative Ijeoma Isiadinso, MD, MPH

FH and Public Health, the American Experience Muin J. Khoury, MD, PhD

Cholesterol Connect - LDL-C, Lp(a) Hilliard "Hilly" Paige, Jr.

Brussels Lp(a) Summit 2025

Børge Nordestgaard, MD, DMSc

Roundtable Dialogue Call to Action

4:05 pm

Closing Reception (Garden Courtyard)

4:30 pm

2025 FAMILY HEART GLOBAL SUMMIT |

The Family Heart Foundation would like to thank our 2025 Family Heart Global Summit® sponsors for their continued commitment to driving the prevention of cardiovascular disease.

Foundation Level

Premier Level

Partner Level

Supporting Level

exhibit tables 12 | View 2025 FAMILY HEART GLOBALduring SUMMIT Summit Session hours in the Lullwater Ballroom Foyer.

October 3 & 4, 2026

Global Summit

Family Heart Foundation

San Diego California 2025 FAMILY HEART GLOBAL SUMMIT |

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Innovating Heart Health Research, Advocacy, and Care For more than a decade, the Family Heart Foundation has brought together leading minds to advance diagnosis, research, and care for people living with familial hypercholesterolemia (FH) and elevated lipoprotein(a), or Lp(a), at the annual Family Heart Global Summit. This two-day event is designed to foster in-depth learning, meaningful networking, and collaboration among thought leaders, clinicians, researchers, advocates, and people with lived experience. Together, we share knowledge, stories, and strategies to accelerate efforts to prevent heart disease among the most vulnerable populations. The Global Summit has become a cornerstone for progress in understanding and treating FH and Lp(a). It builds bridges between research, clinical practice, and communities—uniting us in our mission to create lasting, systemic change for families and their care teams. Over the years, these gatherings have sparked important programs and research, including the

CASCADE FH® Registry, the FIND FH® and FIND Lp(a)® initiatives, and Care Navigation, among others. More than 3,000 participants from across the United States and around the world have joined the Global Summit to catalyze change and establish best practices. Each year, our collective work raises the standard of care, drives innovation, and strengthens advocacy for those affected by FH and Lp(a).

“We have international experts—clinicians, scientists— who come together to discuss breakthroughs all in the interest of the patient and the public health.” – Keith C. Ferdinand, MD Tulane School of Medicine 2025 FAMILY HEART GLOBAL SUMMIT |

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We’ve been privileged to learn from visionary speakers and leaders who have shaped the field, and we continue to welcome new voices and perspectives that will guide the next wave of progress. None of this is possible without the dedication of the Family Heart Foundation team, our partners, and every individual who joins us in this shared mission. Thank you for being part of the Family Heart Global Summit. Your presence, passion, and partnership make this gathering a true call to action—one that inspires real change and brings us closer to saving more families and more hearts. Follow #FHFSummit25 to join the conversation in real time, and visit FamilyHeart.org/Summit for more information, post-event content, and highlights.

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Together, let’s continue driving research, advocacy, and care forward—for every generation, and for every heart.

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Familial Hypercholesterolemia Summit Annapolis, MD

2013

Since our start as the FH Foundation in 2013, what began as a small gathering in Annapolis, MD, has grown into the leading global forum for FH and Lp(a), alongside our evolution into the Family Heart Foundation. Each year, the Summit builds on past success to tackle new challenges and advance what's possible in heart health. Bridging the Gaps in Care of Familial Hypercholesterolemia New York, NY

2014

Our second Summit, held in New York City, introduced a unifying theme: bridging gaps in FH care. We explored the journey from undiagnosed to diagnosed, primary to specialty care, and individual to family treatment. A global panel brought together international voices to share insights and learn from one another. Familial Hypercholesterolemia at the Crossroads Pasadena, CA

2015

In 2015, with the promise of the new PCSK9 inhibitor therapy, we reached a crossroads in the way we care for FH. As we all arrived in Pasadena, we brought the hope and optimism of new treatments, knowing this was a pivotal moment, a time to decide where to go next in saving the lives of those effected by FH. Translational Medicine in Familial Hypercholesterolemia Dallas, TX

2016

The 2016 FH Foundation Global Summit took us to Texas, the stomping ground of legendary scientists Dr. Michael Brown and Dr. Joseph Goldstein. We honored them with a Pioneer Award and they honored us with a keynote delivery on their groundbreaking discoveries that revolutionized our understanding of the role of LDL cholesterol in cardiovascular disease. Familial Hypercholesterolemia: Diagnosis, Treatment & Access Across Diverse Populations Miami, FL

2017

Each year, we shape our program to reflect evolving science and the realities of healthcare. When our CASCADE FH® Registry revealed delayed treatment for women and underrepresentation of non-white populations, we focused the Summit on improving diagnosis, treatment, and access across diverse groups. We honored Dr. Nanette Wenger for her pioneering work in advancing cardiovascular care for women and challenging the myth that heart disease is a “man’s disease.” Familial Hypercholesterolemia: Implementation Science for Health Impact Marina del Rey, CA

2018

In 2018, we shifted our focus to implementation science to better understand where effective tools are lost along the healthcare journey. We also launched a Global Call to Action to update the 1998 WHO Report on FH. Partnering with the World Heart Federation, we brought together the international FH community—including affected individuals, advocates, experts, policymakers, and original report authors—to revise the recommendations for today’s needs.

Familial Hypercholesterolemia: A Prototype for Precision Public Health Atlanta, GA

We traveled to Atlanta for the 2019 FH Global Summit where we took a hard look at the ways that FH provides a perfect prototype for precision public health. We had no idea that would be our last Summit for several years.

2019

Familial Hypercholesterolemia: Driving Solutions to Prevent Inherited Cardiovascular Disease Virtual

As we optimistically soared into 2020, the world was forever changed by the COVID-19 pandemic. We continued to convene and connect virtually, but we longed for the in-person collaboration that changes systems and shifts the status quo. During this time, we took a look at the landscape of cardiovascular disease and expanded our mission. We could no longer ignore the call to provide research and advocacy for those living with genetically elevated lipoprotein(a). We answered the call and became the Family Heart Foundation.

2020/21

Through a Wider Lens: Lipid Management Across Populations and Lifetimes Washington, DC

We re-emerged in 2023 as the Family Heart Foundation Global Summit. As we expanded our mission to serve not just those with FH but also those with high Lp(a), we asked attendees to widen their lens. The event focused on two key questions: Why do many healthcare innovations—scientific breakthroughs, new therapies, and process improvements—fall short in the real world? And how can we address the uneven uptake of these advances, which too often fail to reach women and non-white populations?

2023

The Golden Age of Lipid Lowering: From Innovation to Impact Dallas, TX

In 2024, we marked 10 years of impact in inherited lipid care. Under the theme “The Golden Age of Lipid Lowering: From Innovation to Impact,” the Summit brought together Nobel Laureates Drs. Michael Brown and Joseph Goldstein, alongside experts and patients, to bridge the gap between discovery and care. We honored Dr. Helen Hobbs with the Pioneer Award for her transformative work on PCSK9 inhibitors. The event celebrated progress and renewed our commitment to turning innovation into action.

2024

Catalyzing Collective Action for Lp(a) & FH: Connecting Individuals, Clinicians and Communities Atlanta, GA

In September 2025, the Family Heart Global Summit comes to Atlanta with the theme “Catalyzing Collective Action for Lp(a) & FH: Connecting Individuals, Clinicians and Communities.” This unique global forum brings together academia, industry, public health leaders, and patients to bridge gaps between innovation and impact—leveraging data, AI, and health equity strategies to transform care. We’re proud to honor Dr. Sotirios Tsimikas with the Pioneer Award for his groundbreaking Lp(a) research.

2025

2025 FAMILY HEART GLOBAL SUMMIT |

Sotirios (Sam) Tsimikas MD Keynote Speaker

Family Heart Foundation 2025

Pioneer Award For more than three decades, Sotirios (“Sam”) Tsimikas, MD, FACC has been at the forefront of discovery in vascular medicine, pioneering research that has transformed our understanding of a little-known but powerful driver of cardiovascular disease: lipoprotein(a), or Lp(a). His work has helped bring this once-overlooked particle into the spotlight, inspiring a new wave of scientific investigation and opening the door to therapies that could save countless lives. Dr. Tsimikas’s journey began at the University of Massachusetts Medical School, where he earned his medical degree before completing 22 | 2025 FAMILY HEART GLOBAL SUMMIT

his internal medicine residency. Drawn to the intricate interplay of biology and patient care, he pursued fellowships at the University of California, San Diego (UCSD) in cardiovascular disease, interventional cardiology, and molecular medicine. There, he began to focus on atherosclerosis — the buildup of plaque in the arteries — and the hidden molecular drivers that fuel it. Among his most significant contributions is his groundbreaking work on oxidized phospholipids carried by Lp(a), a finding that linked this lipoprotein to both heart disease and calcific aortic valve stenosis. By uncovering how these

“There is a lot of intrigue about it [Lp(a)]. Is it just an error of evolution that became very common? Does it have a physiological function? We don’t know.” — Sotirios (Sam) Tsikikas, MD particles promote inflammation and calcification in blood vessels and valves, Dr. Tsimikas provided a critical piece of the puzzle that had eluded scientists for decades. This research has not only advanced fundamental science — it has shaped the direction of drug development. As Senior Vice President of Clinical Development and Cardiovascular Franchise Leader at Ionis Pharmaceuticals, Dr. Tsimikas has helped shepherd novel antisense therapies targeting apolipoprotein(a) into clinical trials. These investigational medicines are now offering hope to patients with dangerously high Lp(a) levels, for whom standard cholesterol-lowering therapies are not enough.

nation’s most respected vascular programs, caring for patients with complex cardiovascular disease and mentoring the next generation of clinician-scientists. His ability to bridge laboratory research, clinical care, and therapeutic innovation embodies the very definition of translational medicine. Over the course of his career, Dr. Tsimikas has authored hundreds of peer-reviewed publications and delivered keynote lectures across the globe. His work has illuminated not only the biology of Lp(a) but also its importance in clinical practice, influencing screening guidelines and shaping how physicians assess cardiovascular risk. This year, the Family Heart Foundation is proud to honor Dr. Sam Tsimikas with the Pioneer Award for his exceptional contributions to cardiovascular medicine, his relentless pursuit of scientific discovery, and his unwavering dedication to improving patient lives. From the lab bench to the patient bedside, and now to the development of first-in-class therapies, Dr. Tsimikas’s career is a testament to the power of curiosity, perseverance, and the belief that science can — and should — change the world.

Even as he has taken on leadership in industry, Dr. Tsimikas has remained deeply connected to academic medicine. As Professor of Medicine and Director of Vascular Medicine at the UCSD School of Medicine, he has built one of the 2025 FAMILY HEART GLOBAL SUMMIT |

Legends in Cardiovascular Prevention: Looking Back and Moving Forward 24 | 2025 FAMILY HEART GLOBAL SUMMIT

Trailblazers in Cardiovascular Care

A Conversation Across Generations

For more than half a century, a small but extraordinary group of visionaries has shaped the way the world understands, prevents, diagnoses, and treats cardiovascular disease (CVD). These legends in CVD prevention have transformed the outlook for people living at risk for and living with cardiovascular disease. The contributions of the legends have had an impact on people living with familial hypercholesterolemia (FH), elevated lipoprotein(a) [Lp(a)], and high cholesterol—conditions once poorly understood and often left untreated. At the 2025 Family Heart Global Summit, we are honored to gather four of these trailblazers— W. Virgil Brown, MD; Nanette K. Wenger, MD; Anne Tybjærg-Hansen, MD, DMSc; and Richard Allen Williams, MD—for a valuable conversation that looks back on the breakthroughs that defined their careers and forward to the possibilities that lie ahead.

The session, Legends in CVD Prevention: Looking Back and Moving Forward, will explore the moments that changed the course of cardiovascular medicine—discoveries, collaborations, and even the setbacks that led to new opportunities. The panelists will reflect on why, despite monumental progress, the promise of optimal care has yet to be fully realized for all.

Setting the Stage The session opens with remarks from Børge Nordestgaard, MD, DMSc, himself a leader in lipid research, who will frame the discussion within a remarkable timeline: 200 collective years of experience in CVD prevention represented on a single stage. From the first clinical descriptions of FH to the latest gene-silencing therapies, the panel will trace how far the field has come—and the challenges still to be met.

They will also look ahead to the next 50 years, imagining the innovations, policies, and cultural shifts needed to finally end preventable cardiovascular events. From cutting-edge therapeutics for Lp(a) and FH to systems that ensure equitable access to care, their vision will offer a roadmap for the future. Why This Conversation Matters It is rare to find so much history, expertise, and passion gathered in one room. For those working in CVD prevention today—whether as clinicians, researchers, advocates, or patients—this session is both a tribute and a call to action. The lessons these leaders share are not simply about what has been accomplished, but about what remains possible when knowledge, persistence, and compassion come together. As we celebrate their contributions, we are reminded that the story of cardiovascular prevention is still being written. And thanks to the work of these legends, its next chapters are filled with hope.

2025 FAMILY HEART GLOBAL SUMMIT |

W. Virgil Brown, MD

The Architect of Modern Lipidology Dr. Brown’s career has been devoted to decoding the complex mechanisms of cholesterol metabolism and translating those insights into better patient care. His leadership in establishing lipid clinics, founding the National Lipid Association and Journal of Clinical Lipidology, and training generations of physicians has left a lasting imprint on the specialty. As a clinician-scientist, he has balanced rigorous investigation with an unwavering commitment to patients, ensuring that advances in the lab make their way to the bedside.

“We need to clearly define what we are treating and set goals that will actually change the natural history of disease.”

Dr. W. Virgil Brown through the years

Dr. Robert I Levy & Dr. Donald Fredrickson — mentors of Dr. W. Virgil Brown during his time at NIH in the 1960s.

Anne Tybjærg-Hansen, MD, DMSc Linking Genetics and Heart Health

From Copenhagen, Dr. Tybjærg-Hansen has advanced our understanding of how genetic variations influence lipid levels and cardiovascular risk. Her large-scale population studies have been pivotal in identifying the role of Lp(a) and other inherited factors, building the foundation for targeted prevention strategies. Her work bridges the gap between molecular genetics and public health, making precision medicine a reality for more patients.

“Genetics can tell us who is at high risk long before a heart attack occurs. The challenge is turning that knowledge into action.”

Dr. Anne Tybjærg-Hansen with Dr. Børge Nordestgaard in 1986 26 | 2025 FAMILY HEART GLOBAL SUMMIT

Dr. Anne Tybjærg-Hansen with research group

Pioneer Awardees at the 2023 Family Heart Global Summit.

Nanette K. Wenger, MD

A Voice for Women in Cardiology For decades, Dr. Wenger has been a pioneering advocate for recognizing and treating heart disease in women, challenging assumptions that once left half the population underdiagnosed and undertreated. Her groundbreaking work reframed CVD as not only a men’s disease but a leading killer of women, sparking new research, public awareness, and policy change. She continues to mentor, publish, and inspire the next generation of cardiologists.

“One of the lessons I’ve learned is if I believe in something, I have to be persistent, I have to keep pushing, and eventually the world will catch up.” Photo from heart.org

Photo from emorydailypulse.com

Dr. Nanette Wenger through the years

Dr. Nanette Wenger – Pioneer Award at the 2017 FH Global Summit.

Richard Allen Williams, MD Champion of Health Equity

A luminary and champion in the fight against health disparities, Dr. Williams has combined academic excellence with relentless advocacy. Founder of the Association of Black Cardiologists, he has worked to ensure that advances in CVD prevention reach communities historically left behind. His career is a testament to the belief that science must serve everyone, not just those with access and privilege.

“Until the time that I started my cardiology fellowship, I had never seen an African American cardiologist. That is when I decided that this had to change.”

Dr. Richard Allen Willians through the years 2025 FAMILY HEART GLOBAL SUMMIT |

2025 Initiatives

CASCADE FH® Registry Conducting a longitudinal observational study to understand the FH population in the U.S. Care Navigation Center Comprehensive support to help navigate the healthcare journey for people with FH, elevated Lp(a), and high LDL Cholesterol. Cholesterol Connect® Providing free, comprehensive lipid screening and support through our Care Navigation Center to improve outcomes for people with high LDL Cholesterol and/or elevated Lp(a). Community Activation for FH, HoFH and Lp(a) Volunteers who help raise awareness, tell their stories, and support other individuals with FH, HoFH, elevated Lp(a) and polygenic lipid disorders and their families. Corporate Advisory Council A committed group of Family Heart Foundation corporate partners. Family Heart Global Summit® Bringing together world-renowned leaders within and beyond the field of FH and high Lp(a) to address gaps in care. Family Heart Database® Harnessing de-identified longitudinal data from >340 million US individual records to identify and understand gaps in the care of elevated Lp(a), familial hypercholesterolemia and high LDL-cholesterol that can be used to drive change. FH Awareness Day – September 24 Established by the Family Heart Foundation in 2012, FH Awareness Day is dedicated to raising awareness of familial hypercholesterolemia across the globe. #KnowFH Scan to learn more about our programs.

FH Family Screening Initiative Our FH Family Screening initiative will help identify relatives at risk for familial hypercholesterolemia early, empowering families with the knowledge and tools to prevent heart disease. Flag, Identify, Network, Deliver™ (FIND) Initiative FIND FH® & FIND Lp(a)® Identifying and engaging the undiagnosed FH and high Lp(a) populations in the U.S. through healthcare system innovation. Getting On Appropriate Lipid (GOAL) Management Engaging patients, payers, and healthcare practitioners to improve awareness, treatment, and control of LDL Cholesterol in America. Learn more about how to get in the LDL Safe Zone™ at LDLSafeZone.com. Leveraging Evidence And Data (LEAD) for LDL-C Optimal Care Developing clear, consumer-focused recommendations to support people on their journey to the LDL Safe Zone. Leveraging Evidence And Data (LEAD) for Pediatric Cholesterol Screening Raising awareness of universal pediatric lipid screening guidelines in order to reduce the number of early ASCVD preventable deaths by early diagnosis and treatment. Lp(a) AW(a)RE™ Engaging patients, payers, policy makers, and healthcare practitioners to improve awareness, treatment, and control of lipoprotein(a) in America. Lp(a) Community Connect This program is designed to reach individuals in their communities to introduce Lp(a) as a risk factor while at the same time empower, educate and provide support to navigate their healthcare and their Lp(a) journey. Lp(a) Awareness Day – March 24 Established by the Family Heart Foundation in 2022, Lp(a) Awareness Day is dedicated to raising awareness of lipoprotein(a) across the globe. #KnowLpa

2025 FAMILY HEART GLOBAL SUMMIT |

Family Heart Foundation Team

Katherine A. Wilemon Founder & CEO

Chief Innovation Officer

Hilly Paige, Jr.

Laurence Sperling, MD

George Blike, MD

Allison Hawke

Diane MacDougall, MS

Ann Dodge, RN, MSN

Barbra Gladders, MS

Chief Quality & Value Officer

Senior Care Navigator

Shani Bardach, PhD Director of Quality & Research

30 | 2025 FAMILY HEART GLOBAL SUMMIT

Vice President of Operations

Chief Medical Officer

Vice President of Science & Research

Lori Key, RN

Senior Data Analyst

Senior Clinical Associate

Cassie Brugger, MA

Jen Farnell, MA

Senior Program Director

Director of Community Engagement

Family Heart Foundation Team

Susan Marie Seim Creative Director

Miranda Schartz Care Navigator

Susan Childers

Administrative Assistant

Kellyn Van Poppering Program Manager

Aurora Sullivan, MPH Care Navigator

Jacklyn Stephens Graphic Designer

Laura Nicholson, MBA

Manager of Finance & HR

Misty Votaw

Community Engagement Associate

Mikayla Smith, MACS

Digital Communications Specialist

2025 FAMILY HEART GLOBAL SUMMIT |

Board of Directors

Seth J. Baum, MD

Chairman of the Board

Vice Chairman of the Board & Treasurer

Allison Jamison, MBA

Harpreet S. Bhatia, MD, MAS

Shubham Datta, PhD

Brian S. Mittman, PhD

Courtney Riley, MD

Board Member

Casey Mulligan Walsh, MS Board Member

32 | 2025 FAMILY HEART GLOBAL SUMMIT

Board Member

Katherine A. Wilemon Board Member Founder & CEO

“Since my sister’s death, my mom, grandmother and I have joined the Family Heart Foundation as Ambassadors to help bring high Lp(a) to light as an incredibly common and deadly condition. We are aiming to reach patients, families and healthcare providers.” — Courtney Riley, MD Family Heart Ambassador Family Heart Board Member

“Since I was diagnosed with FH, my life has become more purposeful, thanks to the Family Heart Foundation. I realized that FH is a condition that can be managed and I can live an active and fulfilled life. FH does not define me.” — Judy O. Family Heart Ambassador

2025 FAMILY HEART GLOBAL SUMMIT |

13 years of research, advocacy, and education

Launched Family Heart Database®

First use of #KnowFH for FH Awareness Day

1st annual FH Awareness Day

Application for FH ICD-10 Codes

FDA Advisory Committee Meeting for Lomitapide and Mipomersen

2011

2014 FH Global Summit: Bridging the Gaps

2015

2013 2012

FH Foundation founded December 2011

2014 1st Annual Ambassador training 1st Annual FH Global Summit®: Awareness to Action CASCADE FH® Registry established

2015 FH Global Summit: FH at the Crossroads 1st Annual Pioneer Award: Dr. Avedis K. Khachadurian FIND FH® initiative launched HoFH Community established FDA Advisory Committee Meeting for PCSK9 inhibitors 1st FH Awareness outdoor campaign

34 | 2025 FAMILY HEART GLOBAL SUMMIT

Timeline

ICD-10 Codes for FH approved 1.3 million Americans with probable FH mapped through FIND FH 1st Advocacy visit to Capitol Hill FOCUS Initiative launched CASCADE FH® Registry online self-enrollment portal in multiple languages Joined the Genomics and Population Health Action Collaborative (GPHAC) 2016 FH Global Summit: Translational Medicine in FH Pioneer Award: Dr. Michael S. Brown and Dr. Joseph L. Goldstein

1st National HoFH Gathering Clinical Utility of Genetic Testing Statement published FH Can’t Wait educational campaign Convened FH Global Call to Action 1st HoFH Community Gathering 2018 FH Global Summit: Familial Hypercholesterolemia: Implementation Science for Health Impact

2020/21 FH Global Summit: Familial Hypercholesterolemia: Driving Solutions to Prevent Inherited Cardiovascular Disease

Pioneer Award: Dr. Roger R. Williams

Pioneer Award: Dr. Robert A. Hegele

2019

2017 2016

"FH Global Call to Action" published in JAMA

2018 2017 FH Global Summit: Familial Hypercholesterolemia: Diagnosis, Treatment, & Access Across Diverse Populations Pioneer Award: Dr. Nanette Wenger Meeting of Americas FH Diagnosis app launched FH Awareness Day reaches 30 million people around the world 1st annual virtual Race to Save More Hearts fundraiser

2020 2019 FH Global Summit: FH as a Prototype for Precision Public Health Pioneer Award: Dr. Catherine Boileau Published: Effect of Access on Cardiovascular Outcomes 4th Annual Advocacy visit to Capitol Hill FH Global Call to Action initiated FIND FH validated in multiple institutions

2023 Family Heart Global Summit: The Golden Age of Lipid Lowering: From Innovation to Impact

Launched GOAL Program Family Heart Foundation Research: Identifying Disparities for Individuals with FH

Pioneer Award: Dr. Helen Hobbs Launched Cholesterol Connect: LDL-C and Lp(a) screening program

Family Heart Research: Children With HoFH Miss Out On Decades Of Life-Saving Treatment

Published “Universal Pediatric Screening for Familial Hypercholesterolemia”

Family Heart Research: High Lp(a) Increases Cardiovascular Events

Published “Trends in Patient Access to and Utilization of Prescribed PCSK9 Inhibitors in a Large US Claims Database From 2015 to 2021”

Family Heart Research: Few physicians screen for elevated Lp(a) Family Heart Research: FH Diagnosis Increases to 30%

Launched LEAD for Pediatric Cholesterol Screening Initiative

"Runs in the Family" is not a diagnosis™ Campaign

Launched LEAD LDL Optimal Care Pathway Initiative

1st Lp(a) Awareness Day on March 24th

2021

2nd National HoFH Gathering

2025

2023 2022

10 Year Anniversary: Expanded mission to include Lp(a) and became the Family Heart Foundation Launched Care Navigation Center Published: "COVID-19 Associated Risks of Myocardial Infarction in Persons with FH with or without ASCVD"

2024 2024 Family Heart Global Summit®: Through a Wider Lens: Lipid Management Across Populations and Lifetimes Pioneer Award: Dr. Anne Tybjærg-Hansen and Dr. Børge G. Nordestgaard Family Heart Congressional Hearing in Washington D.C. on Prioritizing LDL Cholesterol Control Launched FIND Lp(a)

Published “Contemporary Homozygous Familial Hypercholesterolemia in the US: Insights From the CASCADE FH Registry” LDL Safe Zone Launched ™

Letters to the JAMA editor: “Regarding: USPSTF Recommendation on Screening for Lipid Disorders in Children and Adolescents” Participated in Atlantic’s Health Equity Summit to educate on the PPPLLL Data

2025 Family Heart Global Summit: Catalyzing Collective Action for Lp(a) & FH: Connecting Individuals, Clinicians and Communities Pioneer Award: Dr. Sotirios "Sam" Tsimikas Lp(a) AW(a)RE program launched Lp(a) Community Connect program launched Published "Lipoprotein(a) and recurrent atherosclerotic cardiovascular events: the U.S. Family Heart Database" 3rd National HoFH Gathering

2025 FAMILY HEART GLOBAL SUMMIT |

Driving

Research For the last decade, the Family Heart Foundation has driven research to reveal gaps in FH diagnosis and care and develop solutions in order to prevent early heart disease. More recently, our research efforts have expanded to address similar issues with elevated Lp(a). Our research is focused on problemsolving and addressing the most urgent needs of individuals and families at high genetic risk for early cardiovascular disease.

Database.” This paper, published in the European Heart Journal, showed that in 273,000 individuals with heart disease, higher lipoprotein(a) levels were associated with continuously increasing risk of a recurrent event regardless of sex and race/ ethnicity. Our results also supported current recommendations to aggressively manage other risk factors, especially LDL-C, in individuals with elevated Lp(a).

CASCADE FH® Registry Research In 2013, we created the only national long-term FH research study in the U.S. – the CASCADE FH Registry. The Registry has followed adults and children with FH and HoFH receiving care at 45 leading health systems. We have published research from the Registry in several impactful journals. Because of this research, we know that too many adults with FH are diagnosed decades too late (on average of 48 years), more than half of adults are still not achieving LDL-C goals, and rates of cardiac events remain far too high.

Other recent research has focused on the current state of LDL-C cholesterol management in the US and how it has changed over the past decade.

Our paper on 67 subjects with HoFH, appeared in the Journal of the American Heart Association in April 2023. The data showed a substantial improvement between LDL-C pre-treatment values and follow up values. Not surprisingly, this patient population requires multiple lipid lowering agents to achieve their LDL-C goal. With the availability of newer medications specific to HoFH, reaching LDL-C goals is possible. Family Heart Database™ Since 2014, the Family Heart Foundation created and has maintained the Family Heart Database. This de-identified medical claims database includes diagnosis, procedure, prescription, and lab data on over 340 million individuals from 2012-2024. Insights from analyses allow us to better understand current care, share learnings with clinicians and our community of individuals, and advocate with policy makers to ensure individuals with FH and elevated Lp(a) receive optimal care. In 2025, the Family Heart Foundation published a landmark paper, "Lipoprotein(a) and Recurrent Atherosclerotic Events: the US Family Heart

38 | 2025 FAMILY HEART GLOBAL SUMMIT

Flag Identify Network Deliver™ FIND Initiative To address the low rate of diagnosis of genetic dyslipidemias, in 2014 the Family Heart Foundation launched the Flag, Identify, Network and Deliver (FIND) Initiative. This began with FIND FH® which leveraged machine learning to flag individuals who may have FH using electronic health records. FIND FH coupled a machine learning model with implementation strategies and tools to facilitate patient outreach and support. Through a collaborative learning network that included five healthcare systems, nearly 200 individuals have been newly diagnosed with FH, and new strategies are being incorporated into practice to sustain improvements in FH identification. Building upon the learnings and successes of FIND FH, FIND Lp(a)® was launched in September 2023. With seven participating healthcare systems, this Initiative is now raising awareness of Lp(a) and helping individuals better understand and manage their cardiovascular risk. Incorporating the Patient Perspective Core to our research philosophy is the patient voice. We conduct focus groups, interviews and surveys to ensure that the patient perspective is incorporated in research from the beginning and throughout, leveraging the latest methods in implementation science and behavioral economics. We also include individuals with lived experience as part of the teams that develop strategies and review materials.

Family Heart Publications

2025 Lipoprotein(a) and recurrent atherosclerotic cardiovascular events: the US Family Heart Database, European Heart Journal, 2025 | MacDougall, D.E., et al. Implementation of a Machine Learning Model and Direct-to-Patient Outreach Program for Targeted Screening for Familial Hypercholesterolemia, Journal of Clinical Lipidology, 2025 | Hennessey, K.C., et al. Machine-Learning Assisted Screening with FIND FH for Familial Hypercholesterolemia Among Youth, The Journal of Pediatrics, 2025 | Hennessey, K.C., et al. Using Healthcare Claims Data to Identify Health Disparities for Individuals with Familial Hypercholesterolemia Journal of Clinical Lipidology, 2025 | McGowan, M.P, et al. A novel outreach approach for identification of familial hypercholesterolemia: Interview-based formative evaluation to improve healthcare access and quality PEC Innovation, 2025 | Forcino, R.C., et al Performance of the FIND-FH Machine Learning Algorithm for the Identification of Individuals with Suspected Familial Hypercholesterolemia, Journal of Clinical Lipiodology, 2025 | Carter, S.V. Simulation model to estimate pretreatment (baseline) low-density lipoprotein cholesterol levels in people living with homozygous familial hypercholesterolemia, Journal of Clinical Lipidology, 2025 | Gu, J., et al.

Research Highlights Did you know there is an American Journal of Preventive Cardiology special issue in development that includes highlights from the Family Heart Foundation 2024 Global Summit? Articles include: Fantastic Lived Experience Commentaries: ▶ “A Silent Legacy of Lipids”– J. Farnell ▶ “Familial Hypercholesterolemia: A History of Loss but a Future of Hope” – A. Jamison Original research summarizing our FIND™ FH Collaborative Learning Initiative: ▶ “Novel Strategies to FIND People Living with Genetic Dyslipidemias: The Family Heart Foundation Flag, Identify, Network, and Deliver (FIND) Familial Hypercholesterolemia Collaborative Learning Network” – S. Bardach, et al. A review highlighting our LEAD Pediatrics work –“State-of-the-Art Review: ▶ The Value of Leveraging Evidence and Data (LEAD) in Pediatric Screening for

2024 Universal Pediatric Cholesterol Screening: The Time Has Come! The Journal of Pediatrics 2024 | McGowan, M., et al. Trends in Patient Access to and Utilization of Prescribed PCSK9i Inhibitors in a Large US Claims Database From 2015 to 2021 Circulation 2024 | MacDougall, D., et al. It is Time to Screen for Homozygous Familial Hypercholesterolemia in the United States Global Heart 2024 | Gidding, S., et al.

▶ Familial Hypercholesterolemia” – J. Flyer, et al. Additional articles coming soon! All articles are open access!

View AJPC Family Heart Global Smmit Special Issue

A qualitative study of perceptions of the care pathway for familial hypercholesterolemia: screening, diagnosis, treatment, and family cascade screening Implementation Science Communications 2024 | Pettit, A.R., et al. Family cascade screening for equitable identification of familial hypercholesterolemia: study protocol for a hybrid effectiveness-implementation type III randomized controlled trial. Implementation Science 2024 | Johnson, C. et al. 2025 FAMILY HEART GLOBAL SUMMIT |

Family Heart Publications

2021 (Continued)

2023 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.

COVID-19 associated risks of myocardial infarction in persons with familial hypercholesterolemia with or without ASCVD American Journal of Preventive Cardiology 2021 | Myers, K., et al.

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.

Developing and Optimizing Innovative Tools to Address Familial Hypercholesterolemia Underdiagnosis: Identification Methods, Patient Activation, and Cascade Testing for Familial Hypercholesterolemia (IMPACT-FH) Circulation: Genomic and Precision Medicine 2021 | Campbell-Salome, G., et al.

Genetic Testing for Familial Hypercholesterolemia in Clinical Practice Current Atherosclerosis Reports 2023 | Tricou, E., et al. Optimizing communication strategies and designing a comprehensive program to facilitate cascade testing for familial hypercholesterolemia Current Atherosclerosis Reports 2023 | Campbell-Salome, G., et al.

A proof-of-concept study of cascade screening for Familial Hypercholesterolemia in the US, adapted from the Dutch model American Journal of Preventive Cardiology 2021 | McGowan, M., et al.

2020

Lipoprotein(a): An important piece of the ASCVD risk factor puzzle across diverse populations, American Heart Journal Plus: Cardiology Research and Practice, 2023 | Ciffone, N., et al.

Children with Heterozygous Familial Hypercholesterolemia in the US: Data from the Cascade Screening for Awareness and Detection-FH Registry The Journal of Pediatrics 2020 | de Ferranti, S., et al.

USPSTF Recommendation on Screening for Lipid Disorders in Children and Adolescents JAMA, 2023 | McGowan, M.P. et al.

Patient acceptance of genetic testing for familial hypercholesterolemia in the CASCADE FH Registry Journal of Clinical Lipidology 2020 | Gidding, S.G., et al.

2022

Perspectives from individuals with familial hypercholesterolemia on direct contact in cascade screening Journal of Genetic Counseling 2020 | Schwiter, R., et al.

Patient experiences align with the familial hypercholesterolemia global call to action American Journal of Preventive Cardiology 2022 | Jones, L., et al.

Reducing the Clinical and Public Health Burden of Familial Hypercholesterolemia: A Global Call to Action Journal of American Medical Association Cardiology 2020 | Wilemon K.W., Patel J., et al.

Motivating cascade testing for familial hypercholesterolemia: applying the extended parallel process model for clinician communication Translational Behavioral Medicine 2022 | Campbell-Salome, G., et al.

2021 Acceptability, Appropriateness, and Feasibility of Automated Screening Approaches and Family Communication Methods for Identification of Familial Hypercholesterolemia: Stakeholder Engagement Results from the IMPACT-FH Study Journal of Personalized Medicine 2021 | Jones, L., et al. Implementation of a Machine-Learning Algorithm in the Electronic Health Record for Targeted Screening for Familial Hypercholesterolemia Circulation: Cardiovascular Quality and Outcomes 2021 | Samip, S., et al.

40 | 2025 FAMILY HEART GLOBAL SUMMIT

Women Living with Familial Hypercholesterolemia: Challenges and Considerations Surrounding T heir Care Current Atherosclerosis Reports 2020 | Balla, S.

2019 Precision screening for familial hypercholesterolaemia: a machine learning study applied to electronic health encounter data The Lancet Digital Health 2019 | Myers K.D., et al. Effects of access to prescribed PCSK9 inhibitors on cardiovascular outcomes Circulation: Cardiovascular Quality and Outcomes 2019 | Myers K.D., Niloofar, F., et al.

Family Heart Publications

2019 (Continued)

2016

Longitudinal low density lipoprotein cholesterol goal achievement and cardiovascular outcomes among adult patients with familial hypercholesterolemia: The CASCADE FH registry Atherosclerosis 2019 | Duell P.B., et al.

US Physician Practices for Diagnosing Familial Hypercholesterolemia: Data from the CASCADE FH Registry Journal of Clinical Lipidology 2016 | Ahmad ZS, et al.

Finding missed cases of familial hypercholesterolemia in health systems using machine learning npj Digital Medicine 2019 | Banda J.M., et al.

Treatment Gaps in Adults with Heterozygous Familial Hypercholesterolemia in the United States: Data from the CASCADE FH Registry Circulation: Cardiovascular Genetics 2016 | deGoma, E.M., et al.

2018

Statins in Familial Hypercholesterolemia— Translating Evidence to Action Journal of American College of Cardiology 2016 | Knowles J.W., et al.

Clinical Genetic Testing for Familial Hypercholesterolemia Journal of the American College of Cardiology 2018 | Sturm A.S., et al. Delivery Of Cascade Screening For Hereditary Conditions: A Scoping Review of the Literature Health Affairs 2018 | Roberts M., et al. Familial hypercholesterolemia patient support groups and advocacy: A multinational perspective Atherosclerosis 2018 | Payne J., et al.

Enough Evidence, Time to Act! Circulation: Cardiovascular Genetics 2016 | Knowles J.W., et al.

2015 Diagnosis Familial Hypercholesterolemia in the United States: Results from the CASCADE FH Patient Registry Journal of Clinical Lipidology 2015 | Ahmad Z.S., et al.

ClinVar database of global familial hypercholesterolemia-associated DNA variants Human Mutation 2018 | Iacocca M.A., et al.

Familial Hypercholesterolemia and the 2013 American College of Cardiology/American Heart Association Guidelines: Myths, Oversimplification and Misinterpretation versus Facts American Journal of Cardiology 2015 | Knowles J.W., et al.

Familial hypercholesterolaemia patient–determined themes for community-engaged research Health Education Journal 2018 | DeAngelis, E.J., et al. Is diet management helpful in familial hypercholesterolemia? Current Opinion in Clinial Nutrition and Metabolic Care 2018 | Gidding, S.

The Rationale and Design of the CASCADE FH Registry: Expert Analysis Journal of American College of Cardiology 2015 | O’Brien E.C., et al. The Agenda for Familial Hypercholesterolemia A Scientific Statement From the America Heart Association American Heart Association 2015 | Gidding S.

2017 The Role of Registries and Genetic Databases in Familial Hypercholesterolemia Current Opinion: Lipidology 2017 | Kindt I., et al. Access to Non-Statin Lipid Lowering Therapies in Patients at High Risk of Atherosclerotic Cardiovascular Disease Circulation: Cardiovascular Genetics 2017 | Knowles J.W., et al. Cascade Screening for Familial Hypercholesterolemia and the Use of Genetic Testing Journal of American Medical Association 2017 Knowles J.W., et al. Health disparities among adult patients with a phenotypic diagnosis of familial hypercholesterolemia in the CASCADE-FH patient registry Atherosclerosis 2017 | Amrock S.M., et al.

2014 Reducing the Burden of Disease and Death from Familial Hypercholesterolemia: A Call to Action American Heart Journal 2014 | Knowles J.W., et al. Underutilization of Cascade Screening for Familial Hypercholesterolemia Journal of Clinical Lipidology 2014 | Neal W.A., et al. Rationale and Design of the Familial Hypercholesterolemia Foundation CAscade SCreening for Awareness and DEtection of Familial Hypercholesterolemia Registry American Heart Journal 2014 | O’Brien E.C., et al. Familial Hypercholesterolemia In Rare Disease Database 2014. National Organization for Rare Disorders | Knowles J.W., et al.

2025 FAMILY HEART GLOBAL SUMMIT |

Family Heart Abstracts

2025

2022

LDL-C Treatment Trends from 2014 - 2023 in 3 Million US Individuals with ASCVD:a Retrospective Cohort Analysis Using the Family Heart Database®, 2025 | Presented at European Atherosclerosis Society & NLA

Using Healthcare Claims Data and Machine Learning to Identify Health Disparities for Individuals with Diagnosed and Undiagnosed Familial Hypercholesterolemia 2022 | Presented at AHA Characterization of Children with Homozygous Familial Hypercholesterolemia from the CASCADE FH® Registry 2022 | Presented at AAP

Examining Barriers and Facilitators to Testing Lipoprotein(a): Understanding At-Risk Individual and Clinician Perspectives through the Lens of the Integrated Screening Action Model, 2025 | Presented at ASPC Catching Cholesterol Culprits: Machine-Learning Algorithm Based Approach to Detection of Undiagnosed Familial Hypercholesterolemia, 2025 | Presented at ASPC Performance of the FIND-FH Machine Learning Algorithm for the Identification of Individuals with Suspected Familial Hypercholesterolemia, ASPC 2025 | Presented at ASPC Cholesterol Management in US Individuals with ASCVD during 2022/2023: Gaps in Care and Opportunity for Improvement A Study from the Family Heart Database® 2025 | Presented at AHA

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 Real-World, Observational Study of Elevated Lp(a) and Cardiovascular Events 2022 | Presented at EAS Characterization of Lp(a) Measurement In a Large U.S. Health Care Dataset 2023 | Presented at NLA and CMHC

AI-Driven Identification and Outreach for Familial Hypercholesterolemia: Early Results from the FIND-FH Initiative at a Single Academic Center, 2025 | Presented at AHA

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)

Novel Strategies to FIND People Living with Genetic Dyslipidemias: Results from The Family Heart Foundation Flag, Identify, Network, and Deliver™ Familial Hypercholesterolemia (FIND FH) Collaborative Learning Network 2025 | Presented at AHA

Yield of a Familial Hypercholesterolemia Genetic Diagnosis After Electronic Health Record and Genomic Data Screening 2022 | Presented at AHA (with IMPACT FH)

Trends in Adoption of the Familial Hypercholesterolemia Diagnostic Code E78.01 in U.S. Healthcare Settings, from 2016 to 2024, AHA 9) Payor analysis: state of LDL control in highest 10 commercial plans and highest volume part D plans, 2025 | Presented at AMCP

2020

2024

Lipoprotein(a) and risk of cardiovascular disease events: an analysis in a large US national database 2024 | Presented at AHA

Acceptability and Feasibility of Novel Screening Models and Family Communication Methods for Familial Hypercholesterolemia 2020 | Presented at AHA (with IMPACT FH)

The Family Heart Foundation™ Flag, Identify, Network, Deliver— Familial Hypercholesterolemia (FIND-FH™) Program and Collaborative Learning Network (CLN): 18 Month Progress Report 2024 | Presented at NLA

2019

Development of the Family Heart Foundation™ Flag, Identify, Network, Deliver—Familial Hypercholesterolemia (FIND-FH™) Implementation Toolkit 2024 | Presented at NLA

2023 Lipoprotein(a) Screening Practices in a Large US Healthcare Dataset 2023 | Presented at AHA 72% of High-Risk Hypercholesterolemia Patients Never Reach Below ACC/AHA Guideline LDL-C Thresholds 2023 | Presented at ACC The Vast Majority of Hypercholesterolemia Patients Never Reach Below LDL-C Thresholds in the 2018 ACC/AHA Guideline 2023 | Presented at NLA Higher Cardiovascular Event Rates for High-Risk Americans Who Do Not Meet 2018 Multidisciplinary Guideline on the Management Of Blood Cholesterol 2023 | Presented at AMCP Higher Cardiovascular Event Rates for Americans Who Do Not Meet 2018 Multidisciplinary Guideline on the Management Of Blood Cholesterol Thresholds 2023 | Presented at NLA

Familial Hypercholesterolemia Patients Response to a Free Genetic Testing Offer 2019 | Presented at AHA and FH Global Summit Validation of Flag, Identify, Network, Deliver: FIND FH® Using the Electronic Medical Record to Identify Familial Hypercholesterolemia within a Single Healthcare System 2019 | Presented at FH Global Summit Implementation of Flag, Identify, Network, Deliver: FIND FH® Using the Electronic Medical Record to Identify Familial Hypercholesterolemia within a Single Healthcare System 2019 | Presented at FH Global Summit Homozygous Familial Hypercholesterolemia in the United States: Data from the CASCADE FH® Registry 2019 | Presented at NLA A Complex Rearrangement in the LDLR Gene in a Patient with Familial Hypercholesterolemia and Severe Coronary Artery Disease 2019 | Presented at ACMG (with COLOR) Cost-effectiveness of Screening and Management Strategies for Familial Hypercholesterolemia in the United States: an Update 2019 | Presented at ISPOR (with USC)

Family Heart Abstracts

2017

2015

Health Disparities among Adult Patients with Familial Hypercholesterolemia in the CASCADE FH™ Patient Registry 2017 | Presented at ACC

Initial Results from the CASCADE-FH Registry: CAscade SCreening for Awareness and Detection of Familial Hypercholesterolemia 2015 | Presented at ACC

Improved Longitudinal LDL-C Goal Achievement Among Familial Hypercholesterolemia Patients in the CASCADE FH™ Patient Registry 2017 | Presented at AHA

Diagnosing Familial Hypercholesterolemia (FH) in the US: Results From the CASCADE FH Patient Registry 2015 | Presented at NLA

Pediatric Familial Hypercholesterolemia: Children and Adolescents Enrolled in the CAscade SCreening for Awareness and DEtection FH Registry 2017 | Presented at NLA

2025 FAMILY HEART GLOBAL SUMMIT |

FIND FH Publications

Participating Health Systems Articles and Abstracts

Articles

Abstracts

Carter, S. V., Triana, T., Basit, M., Schneider, R., Ayers, C. R., Moon, J., Ingle, T., Cade, L., MacDougall, D. E., Blike, G., Ahmad, Z., & Khera, A. (2025). Performance of the FIND-FH machine learning algorithm for the identification of individuals with suspected familial hypercholesterolemia. Journal of Clinical Lipidology, 19(4), 1037–1043.

Hennessey, K. C., Bardach, S. H., Sturke, T., Vaze, V. S., Kalkur, R. S., Prince, A. J., Shi, H., Hofley, M. A., Chin, P., Forcino, R., & McGowan, M. P. (2025). Implementation of a machine learning model and direct-to-patient outreach program for targeted screening for familial hypercholesterolemia. Journal of Clinical Lipidology, 19(4), 1029–1036. Forcino, R C, et al. (2025). A novel outreach approach for identification of familial hypercholesterolemia: Interview-based formative evaluation to improve healthcare access and quality. PEC Innovation, 100407. Lee, H, et al. (2025). Beyond identification of familial hypercholesterolemia: Improving downstream visits and treatments in a large health care system: Improving FH Care. American Journal of Preventive Cardiology, 21, 100937. Hennessey, KC, et al. (2025). Machine-Learning Assisted Screening with FIND FH® for Familial Hypercholesterolemia Among Youth. The Journal of Pediatrics, 114640. Kim, K. et al. (2024). Implications of Diagnosis Through a Machine Learning Algorithm on Management of People With Familial Hypercholesterolemia. JACC: Advances, 3(9_Part_2), 101184. Kim, K, et al. (2024). Primary care clinician engagement in implementing a machine-learning algorithm for targeted screening of familial hypercholesterolemia. American Journal of Preventive Cardiology, 19, 100710. Pettit, AR, et al. (2024). A qualitative study of perceptions of the care pathway for familial hypercholesterolemia: Screening, diagnosis, treatment, and family cascade screening. Implementation Science Communications, 5(1), 135. Osei, J, et al. (2024). A Scoping Review of Electronic Health Records–Based Screening Algorithms for Familial Hypercholesterolemia. JACC: Advances, 3(12_Part_2), 101297. Sheth, S, et al. (2021). Implementation of a Machine-Learning Algorithm in the Electronic Health Record for Targeted Screening for Familial Hypercholesterolemia: A Quality Improvement Study. Circulation: Cardiovascular Quality and Outcomes, 14(6), e007641.

AI-Driven Identification and Outreach for Familial Hypercholesterolemia: Early Results from the FIND-FH Initiative at a Single Academic Center – 2025/ Accepted for presentation at AHA Performance of the FIND-FH Machine Learning Algorithm for the Identification of Individuals with Suspected Familial Hypercholesterolemia 2025/ Presented at American Society for Preventive Cardiology Catching Cholesterol Culprits: Machine-Learning Algorithm (MLA)-Based Approach to Detection of Undiagnosed Familial Hypercholesterolemia (FH) 2025/ Presented at American Society for Preventive Cardiology and at the 31st Annual Emory Cardiology Research Symposium Development of the Family Heart Foundation™ Flag, Identify, Network, Deliver—Familial Hypercholesterolemia (FIND-FH™) Implementation Toolkit - 2024/ Presented at National Lipid Association The Family Heart Foundation™ Flag, Identify, Network, Deliver—Familial Hypercholesterolemia (FIND-FH™) Program and Collaborative Learning Network (CLN): 18 Month Progress Report – 2024/ Presented at National Lipid Association Back to the (not so) basics: An AI-driven approach to engaging primary care clinicians in preventative care for Familial Hypercholesterolemia – 2024/ Presented at SGIM Annual Meeting Coproduction of a novel outreach approach for identification of Familial Hypercholesteremia – 2024/ Presented at International Shared Decision Making Conference Electronic Health Record-Integrated Platform for Patients with Severe Hypercholesterolemia and Familial Hypercholesterolemia Reveals Opportunities for Quality Improvement in a Large Healthcare System – 2024/ Presented at American Heart Association Demographics of rural adult patients flagged with the FIND-FH algorithm – 2024/ Presented at American College of Cardiology & 2024/ Presented at American College of Cardiology Primary care physician engagement in implementing a machine-learning algorithm for targeted screening of Familial Hypercholesterolemia – 2024/ Presented at American College of Cardiology

Myers, KD, et al. (2019). Precision screening for familial hypercholesterolaemia: A machine learning study applied to electronic health encounter data. The Lancet Digital Health, 1(8), e393–e402.

Demographics of rural pediatric patients flagged with the Find-FH algorithm – 2024/ Presented at American College of Cardiology

Banda, JM, et al. (2019). Finding missed cases of familial hypercholesterolemia in health systems using machine learning. Npj Digital Medicine, 2(1), 23.

Using Healthcare Claims Data and Machine Learning to Identify Health Disparities for Individuals with Diagnosed and Undiagnosed Familial Hypercholesterolemia – 2022/ Presented at American Heart Association and World Congress Insulin Resistance, Diabetes & Cardiovascular Disease.

Carter, SV, et al. (In Press). Performance of the FIND-FH Machine Learning Algorithm for the Identification of Individuals with Suspected Familial Hypercholesterolemia, Journal of Clinical Lipidology Hennessey, KC, et al. (n.d.). Implementation of a Machine Learning Model and Direct-to-Patient Outreach Program for Targeted Screening for Familial Hypercholesterolemia. Journal of Clinical Lipidology.

Implementation of Flag, Identify, Network, Deliver (FIND FH) Machine Learning Algorithm: A Quality Improvement Initiative to Perform Targeted Screening for Familial Hypercholesterolemia within a Single Healthcare System – 2020/ Presented at American Society for Preventive Cardiology Finding undiagnosed patients with Familial Hypercholesterolemia in Primary Care Using Electronic Health Records – 2020/ Presented at American College of Cardiology Implementation Of Flag, Identify, Network, Deliver: Find FH Using the Electronic Medical Record To Identify Familial Hypercholesterolemia Within a Single Healthcare System – 2019/ Presented at American Heart Association

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Lipoprotein(a) Research Analysis of Large U.S. Healthcare Dataset Reveals Poor State of Lp(a) Measurement The Family Heart Foundation completed an analysis of its large U.S. Family Heart Database™ demonstrating that lipoprotein(a) is rarely assessed, despite it being a common, independent risk factor for atherosclerotic cardiovascular disease (ASCVD). Of the 44 million adults for whom data was analyzed, only 1.1% had at least one Lp(a) measurement. The data was presented in a poster titled, “Lipoprotein(a) Screening Practices in a Large US Healthcare Dataset” at the American Heart Association Scientific Sessions in November, 2023.

Heart Foundation’s large, real-world, national healthcare database which includes more than 300 million Americans; 44 million adults with sufficient laboratory and medical claims data from 2012 to 2021 were included in the analysis. Of those, Lp(a) was measured in only 1.1% (500,899/44,857,734) of adults, and 2.0% (218,331/10,658,820) of those with ASCVD. The data indicated that individuals who underwent Lp(a) testing had a median age of 60 years, were more frequently women (55%), and often had ASCVD (44%).

“Elevated Lp(a) is a known risk factor for premature cardiovascular disease such as heart attacks and strokes, and it’s estimated to be present in 20% of the population. Yet, it appears that few people have their Lp(a) measured, and when it is measured, it is only for individuals with multiple cardiac risk factors. While the analysis provides great insights, more research is needed to understand barriers and facilitators to Lp(a) testing within the healthcare setting.” Mary P. McGowan, MD, former Chief Medical Officer, Family Heart Foundation and lead author of the study.

Lp(a) screening volume was very low from 2012 to 2018 and increased during 2019 to 2021. Furthermore, of the 41,976 health care practitioners who had patients with laboratory data in the database, 1.6% (687) ordered more than 50% of the Lp(a) tests.

To determine how commonly Lp(a) was measured, data were analyzed using the Family

Elevated levels of Lp(a) increase inflammation, plaque buildup inside the arteries, and appear to promote blood clotting. These attributes can contribute to blocking the flow of blood and oxygen to the heart or brain and result in a heart attack or stroke. Testing for Lp(a) requires a simple blood test, but it is not part of a standard lipid panel.

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“Thanks to the Family Heart Foundation I have access to current information, research and one on one support which allows me to face my diagnosis of high Lp(a) with knowledge, not fear.” — Abby D. Family Heart Ambassador

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"After 30 years with heart disease, I finally found an explanation and hope by joining the Family Heart Foundation." — Jos K. Family Heart Ambassador

"Realizing that I passed this gene on to my daughter was heartbreaking. However, I knew that I would give her all the opportunities to make sure she would remain as healthy as possible." — Lisa R. Family Heart Ambassador

"I think it's really important for people to understand that the earlier FH is caught, the more easily someone can make it a part of their life. It made it less of a disturbance and more a seamless and natural part of my life." — Amelia S. Family Heart Ambassador 2025 FAMILY HEART GLOBAL SUMMIT |

Homozygous

Familial Hypercholesterolemia in the U.S.

A new study from the Family Heart Foundation showed the diagnosis and treatment of homozygous familial hypercholesterolemia (HoFH) is delayed and often occurs only after a heart attack or early atherosclerotic cardiovascular disease (ASCVD). HoFH is a rare disease and is the most severe form of the common inherited genetic disorder called familial hypercholesterolemia (FH). HoFH leads to severely elevated low density lipoprotein cholesterol (LDL-C) from birth onward. While some with the highest LDL-C are diagnosed with HoFH in childhood, many others are missed, denying them the opportunity for timely initiation of aggressive lipid-lowering therapies (LLT) and resulting in premature cardiovascular disease. The new study was published online in the Journal of the American Heart Association (JAHA). “This Family Heart Foundation study demonstrates missed opportunities for HoFH diagnosis across the lifespan, with many adults in the U.S. still undiagnosed, leading to very real consequences from early heart attacks or strokes,” said Mary P. McGowan, MD, former Chief Medical Officer, Family Heart Foundation, and co-author of the study. “We’ve found that health care providers often fail to follow the American Academy of Pediatrics and the National Institutes of Health recommendations for pediatric lipid screening, leaving children with HoFH undiagnosed. There is a need for clinicians to screen children and adults appropriately and to take action when LDL-C levels suggest HoFH. People living with HoFH deserve the benefit of all available LDL-C lowering treatments, most of which are underutilized.” The current study, “Contemporary Homozygous Familial Hypercholesterolemia in the United States,” is the largest U.S. description of contemporarily treated patients with HoFH. The study examined the HoFH population in two proprietary Family Heart Foundation databases: CASCADE FH® Registry and the Family Heart Database. This comprehensive assessment of HoFH care in both databases indicates that increased lipid screening in childhood and adulthood is necessary to improve diagnosis, and that aggressive use of all available lipid lowering therapies (LLT) will be required to improve lipid management in this very high-risk population. Key findings show despite treatment with available ther48 | 2025 FAMILY HEART GLOBAL SUMMIT

apies, most patients in the Registry still require further LLT to achieve their LDL-C goal and patients in the real-world Database are both under-diagnosed and under-treated. Insights from the CASCADE FH Registry found that at the time of enrollment into the Registry, 78% of adults and 44% of children with HoFH already had documented ASCVD. Treatment with three to six LLTs in specialty lipid clinics, resulted in overall LDL-C reductions of 72% in adults and 61% in children from their untreated median baselines of 533 and 776 mg/dL, respectively. Despite this dramatic improvement, most had not yet reached recommended LDL-C levels. Because this study was completed prior to the approval of the newest HoFH-specific treatment, future follow-up is needed to reassess LDL-C goal attainment with the addition of this medication. The analysis from the Family Heart Database of 81 million Americans found 277 individuals with characteristics strongly indicating HoFH, 84% of whom were under the age of 50 and 20% of whom were reported to have ASCVD. Despite a median LDL-C of 444 mg/dL, only 26% had an FH diagnosis. A full 40% were not on any lipid-lowering medications and 19% were on high-intensity statins alone. Less than 20% were on more aggressive therapies needed for adequate LDL-C management in this population. This large database is distinct from the CASCADE FH Registry and includes diagnostic, procedural, and prescription claims data, as well as laboratory information from 2012 to 2021.

Lp(a) & Cardiovascular Risk: New Insights from Real-World Data

The Family Heart Foundation has published groundbreaking results from the largest study ever conducted on individuals living with cardiovascular disease and measured lipoprotein(a) [Lp(a)]. The study reveals that increases in levels of Lp(a) are associated with a higher risk of recurring cardiovascular events, including heart attack and stroke. These findings were presented at the 2025 European Atherosclerosis Society (EAS) Congress in Glasgow, Scotland, by Dr. Børge Nordestgaard, President of EAS, and simultaneously published in the peer-reviewed European Heart Journal — Lipoprotein(a) and recurrent atherosclerotic cardiovascular events: the U.S. Family Heart Database — by lead author Diane MacDougall and colleagues. "While previous smaller studies have shown that the risk of cardiovascular events can increase within certain ranges of Lp(a), this is the first study to show that the risks of cardiovascular events including heart attack, stroke and cardiac surgeries continue to increase across all ascending levels of Lp(a) and that there is no indication that the risk plateaus," said Katherine Wilemon, founder and chief executive officer of the Family Heart Foundation." The U.S. has lagged behind many other countries in recommending that adults complete a simple blood test to measure Lp(a). This study strongly confirms the importance of considering Lp(a) levels among other risk factors when determining an individual's risk of future heart attacks and strokes." The study followed the health histories of a diverse population of 273,770 U.S. individuals with atherosclerotic cardiovascular disease (ASCVD) for a median 5.4 years to determine whether they had another cardiovascular event such as myocardial infarction or ischemic stroke, or a procedure such as percutaneous coronary intervention or coronary artery bypass graft. Within the study population overall, about 33% had low levels of Lp(a) (<15 nmol/L), 33% had moderate levels (15-79 nmol/L), 15% had moderate-to-high levels (80-179 nmol/L), 10% had levels considered high (180-299 nmol/L) and 5% had levels considered very high (300 nmol/L). This study is the first to show that the risk of a subsequent cardiovascular event rises continually as lipoprotein(a) increases from any level. The study also shows that

women and Black individuals are more likely to have elevated Lp(a) levels. "Among the many important findings in this study, we now know that in people living with cardiovascular disease every nmol/L of Lp(a) confers increased risk of a subsequent cardiovascular event. This is a meaningful advancement in our understanding of the impact of Lp(a) on one's health," said Diane MacDougall, Vice President, Science and Research, Family Heart Foundation, and first author of the study. "The results further show that the risk increases regardless of what type of cardiovascular disease individuals had initially (in the heart, brain or legs), whether or not they also had diabetes, or their sex or race/ethnicity. The higher the Lp(a) level, the more likely people living with ASCVD are to have another cardiovascular event." While several investigational drugs are undergoing late-stage testing, currently no drugs are approved to help reduce levels of Lp(a). This study included an analysis to determine whether efforts to manage LDL-C in people with high Lp(a) could be beneficial. Results showed that among people with ASCVD and Lp(a) levels >180 nmol/L, the risk of having another cardiovascular event appears to be diminished by using high impact LDL-C lowering drugs such as high dose statin and PCSK9 inhibitors compared with using lower impact LDL-C lowering drugs or using no drugs. The data were drawn from the Family Heart Database®, a real-world database that includes medical claims from 340 million U.S. individuals between 2012-2022. The database is managed by the Family Heart Foundation to characterize patterns of real-world medical encounters by U.S. individuals with lipid disorders and cardiovascular risk.

"Among the many important findings in this study, we now know that in people living with cardiovascular disease every nmol/L of Lp(a) confers increased risk of a subsequent cardiovascular event. This is a meaningful advancement in our understanding of the impact of Lp(a) on one's health." Diane MacDougall, MS Vice President, Science and Research Family Heart Foundation

"The results are crystal clear; in patients who already have experienced cardiovascular events, higher Lp(a) levels drive a higher risk of new events in a continuous manner, irrespective of sex, ethnicity or race. Intriguingly, we observed that this risk appears to be mitigated in patients receiving high-impact LDL cholesterollowering therapy." Børge Nordestgaard, MD, DMSc President, European Atherosclerosis Society (EAS) 2025 FAMILY HEART GLOBAL SUMMIT |

Increased Lipoprotein(a) Levels Continously Increase Risk for Recurrent Cardiovascular Events The Family Heart Foundation® has published a study, Lipoprotein(a) and Recurrent Atherosclerotic Cardiovascular Events: The US Family Heart Database.

Important Context Only 2% of people with cardiovascular disease have had their Lp(a) measured.*

Lp(a) can be measured in 2 ways: mg/dL or nmol/L. This study includes individuals whose results were in nmol/L.

*McGowan, M., et al. (2023, Nov). Lipoprotein(a) Screening Practices in a Large US Healthcare Dataset [Poster session]. American Heart Association Scientific Session, Philadelphia, PA. familyheart.org/aha-2023-lpa-screening

ABOUT THE RESEARCH This study examines 274,000 individuals with a measured Lp(a) and cardiovascular disease from 2012-2022 in the Family Heart Database®. Largest real-world study of people with cardiovascular disease and Lp(a). HIGHLY REPRESENTATIVE

8% 9% 43% Black Hispanics Women

Baseline Cardiovascular Disease

67% Coronary

27% Cerebrovascular 19% Peripheral

Family Heart Database The Family Heart Database contains de-identified medical claims from 340 million individuals in the U.S. between 2012-2023 that annually represents at least half of the national census population.

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HIGHLIGHTS 25

There is wide variation in Lp(a) levels in the 273,770 individuals with ASCVD studied.

% of group per 10 nmol/L

Lp(a) Level nmol/L

Lp(a) levels in Black individuals are substantially higher than White and Hispanic individuals.

% of Group

< 15

~33%

15 to 79

~33%

80 to 179

~17%

180 to 299

~11%

≥ 300

~5%

Lp(a) levels in women are higher than men.

100 150 200 250 300 350 400 450 500

Lp(a), nmol/L

Black women have the highest levels of Lp(a) as a group

Higher Lp(a) levels continously increase risk for recurrent cardiovascular events. Events include heart attacks, strokes, cardiac surgery, and unstable angina. Recurrent ASCVD: N = 42,000 HR* (95% CI) 3.5 3.0 2.5 2.0 1.5 1.0 0.8

210 410 610 810 1010 1210

Risk of recurrent cardiovascular events increased continously dependent on how high the Lp(a) level was regardless of sex, race, or ethnicity Use of high impact LDL cholesterol-lowering therapies such as high intensity statins, PCSK9 inhibitors, and combination therapy appear to mitigate some risk due to high Lp(a).

Lp(a), nmol/L *HR = Hazard Ratio

To learn more about the work of the Family Heart Foundation visit FamilyHeart.org. MacDougall, D.E., et al. (2025). Lipoprotein(a) and recurrent atherosclerotic cardiovascular events: the US Family Heart Database®. European Heart Journal, 00, 1–14 https://doi.org/10.1093/eurheartj/ehaf297

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"When I found a name for the condition, I felt known. When I found the Family Heart community, I felt empowered. Together we can make a difference." — Liz T. Family Heart Ambassador

“Continue to advocate for yourself, and if you can’t, the Family Heart community is there to help. I’ll talk to anybody. I’ll help because I’ve been there and none of us have to be there again.” — Kristen G. Family Heart Ambassador 54 | 2025 FAMILY HEART GLOBAL SUMMIT

LDL EAS Poster

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“We can get busy living and put our hopes in the development of future treatments and the ongoing good science that top researchers are still discovering. We can use our courage and our signature strengths to help us develop our vision of success and live our best and healthiest lives.” — Susan W. Family Heart Ambassador

“I have been around many organizations in my career and not many match the strategic focus, professionalism and empathy of the Family Heart Foundation. I encourage anyone with questions about Lp(a) to start with them, for understanding. The Family Heart Foundation is driving for solutions with the research community and beyond.” — Roger Z. Family Heart Ambassador

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RES EARCH LETTER

Trends in Patient Access Prescribed PCSK9 Inhibitors in a Large US Claims Database From 2015 to 2021 Diane E. MacDougall, MS; Seth J. Baum, MD; Catherine D. Ahmed, MBA; Mary P. McGowan, MD; Katherine A. Wilemon, BS

Access to prescribed PCSK9 inhibitors remains a significant barrier leaving patients at risk for heart attacks and strokes In February 2024, the Family Heart Foundation published a study in Circulation: Cardiovascular Quality and Outcomes examining patient access to PCSK9 inhibitors (PCSK9i). These cholesterollowering medications, approved in 2015, were hailed as a breakthrough for people with atherosclerotic cardiovascular disease (ASCVD) and familial hypercholesterolemia because they can reduce LDL-cholesterol (LDL-C) by 60% or more and significantly cut the risk of heart attack and stroke. Over the years, PCSK9i have gained expanded FDA approvals, proven their effectiveness in major clinical trials, and seen prices fall by 60%. Yet the study revealed that many patients still face denials from insurers and other barriers that prevent them from accessing these potentially life-saving therapies. “Patients still experience substantial challenges getting the PCSK9i that have been prescribed for them by their medical team, despite guidelines recommending their use and extensive evidence documenting their role in LDL-C reduction and the prevention of heart attack or stroke,” said Diane E. MacDougall, Vice President of Science and Research at the Family Heart Foundation and co-author of the study. “As a result, eligible

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patients remain at higher risk of heart attacks and other major cardiovascular events.” Key findings from the study included: •

High rejection rates: In 2019–2021, 30.95% of PCSK9i prescriptions were rejected by insurers—much higher than for other guideline-recommended cardiometabolic therapies (3.53%–14.61%).

•

Low utilization: New PCSK9i prescriptions remained limited, with 470,018 filled in 2019– 2021 compared with 238,704 in 2015–2018.

•

Lower overall access: When factoring in both rejections and abandonments, the paid prescription rate for PCSK9i was just 49.93%, compared to 68.49%–84.45% for other cardiometabolic drugs.

These findings build on earlier research from the Family Heart Foundation showing that patients denied access to PCSK9i experience significantly more heart attacks, strokes, and other cardiovascular events compared to those who receive treatment. While statins remain the first-line therapy for lowering LDL-C, they may not be enough for many high-risk patients. PCSK9 inhibitors are a vital option—but only if patients can access them.

Familial Hypercholesterolemia

Global Impact Katherine Wilemon began her journey into advocacy in 2010, traveling internationally to confer with scientists, clinicians, and “patient advocates” in countries where the diagnosis rate of familial hypercholesterolemia (FH) was much higher than in the United States. In the process, she learned about the history of MEDPED (Make Early Diagnosis and Prevent Early Death), a network of medical experts focused on FH in 1990’s and their successful advocacy efforts with the World Health Organization (WHO). As a result of the MEDPED efforts, the WHO published a report on familial hypercholesterolemia in 1998, designating the condition a global public health hazard. The 1998 WHO Familial Hypercholesterolemia Report included eleven (11) recommendations to address the significant gaps in diagnosis and medical care based on the screening and therapeutic options available at that time. In 2017, with an eye to the upcoming 20th anniversary of this important document, the Family Heart Foundation invited all the living authors of this groundbreaking report to review the state of progress and update the recommendations. The culmination of this two-year initiative resulted in a coalition of 40 countries and 90 stakeholders

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who provided their perspectives of FH from low-, middle-, and high-income regions. The international group developed a contemporary set of nine (9) public policy recommendations covering awareness, advocacy, screening, diagnosis, treatment, research, registries, and cost/value. The FH Global Call to Action was published in JAMA Cardiology in January 2020. Today, organizations from around the world continue to use this updated report to advocate with national government and health policy leaders to prioritize FH as a public health concern.

"We're still having great difficulty in alerting both the public and the healthcare profession to the need for screening and treatment for people with a family history of early cardiovascular disease" — Roger R. Williams, MD (d. 1998) Founder of the Cardiovascular Genetics Research Clinic at the University of Utah

Reducing the Clinical and Public Health Burden of Familial Hypercholesterolemia

A Global Call to Action Awareness: Awareness should be enhanced regarding the importance of severe hypercholesterolemia and FH as a global public health issue; awareness should be raised in a broad range with the general public, educational institutions (both public and medical), the general medical community, and health care delivery systems. Advocacy: Establishment of country/region specific advocacy organizations, focused on the implementation of the recommendations herein, is of utmost importance. Organizations should be a partnership of patients, physicians, and other health care professionals needed for FH care. Governments and national institutes of health should be made aware of the existence of this health hazard. Screening, Testing, and Diagnosis: Screening for FH should be performed according to country-specific conditions and guidelines. Screening, testing, and diagnosis may be based on cholesterol levels (with cutoff levels adapted to the country/target population) or positive genetic tests for an LDL cholesterol receptor function defect. Treatment: Screening for FH should be performed according to country-specific conditions and guidelines. Screening, testing, and diagnosis may be based on cholesterol levels (with cutoff levels adapted to the country/target population) or positive genetic tests for an LDL cholesterol receptor function defect. Severe and Homozygous FH: Create, as a special case, separate guidelines for severe and homozygous FH, defined as either the presence of LDL cholesterol level >400 mg/dL or a pathogenic gene variant in any of the FH-related genes on 2 different alleles. Family-Based Care: Develop a family-based care plan with opportunities for patient involvement and shared decision-making over the continuum of the life span. Registries: Fund national and international FH registries for research to quantify current practices and identify the gaps between guidelines and health care delivery, to publish outcome metrics for monitoring and standardizing care, identify areas for future resource deployment, dissemination and defining best practices, as well as facilitating FH awareness and screening. Research: Conduct basic science, genetic, epidemiologic, clinical, and implementation science research to improve FH care. Cost & Value: Understand value in FH care, both for the family and for society, including gained years of life expectancy, gained years of life without disability, and lost productivity.

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“I don't want to lose anyone else to heart disease, so I have made it my personal mission to bring awareness about FH to everyone I know.” — Ora W. Family Heart Ambassador

“If you or someone you love is living with HoFH, know that there is a community here for you. Know that a lot of the available literature doesn’t tell you everything there is to know about living with HoFH. There is every reason to be optimistic, and every opportunity to get involved and help to make a difference.” — Allison J. Family Heart Vice Chair & Treasurer Family Heart Ambassador

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Family Heart Foundation

In the News In 2024 and 2025, the Family Heart Foundation built on the success of past efforts with new awareness campaigns in conjunction with FH and Lp(a) Awareness Days. Media relations efforts included: •

•

Expanding the award-winning “Runs in the Family" is Not a Diagnosis™ campaign with new creative content across digital and social platforms. Securing national media placements in leading consumer, health, and wellness outlets highlighting genetic conditions that increase the risk of early heart disease. Featuring Family Heart Ambassadors in articles, interviews, and broadcast segments to share their lived experiences. Conducting three Satellite Media Tours (SMTs): ·

Two timed to Lp(a) Awareness Day in March of 2024 and in 2025 featuring a physician key opinion leader and Family Heart Ambassador.

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A second in end of 2024 focused on LDL and Lp(a) testing, promoting our Cholesterol Connect program.

•

Hosting regional and digital billboard campaigns in targeted markets to reach high-risk communities.

•

Driving awareness of the Family Heart Global Summit, which brought together patients, researchers, and clinicians to accelerate progress.

The media relations activities focused on increasing awareness about FH and elevated Lp(a) as potential causes of premature heart attacks and strokes, and the importance of testing. Results included: •

198 million media impression

•

1,546 airings of the SMTs

•

Billboards reaching populations of 164 million

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“I started to put things together. I researched, formulated a hypothesis, and figured out I might have familial hypercholesterolemia.” — Bri S. Family Heart Ambassador

“The FH community is my FH Family; a beautiful network of others just like me who understand what it's like to live with this disorder who support each other. I found my people.” — Lara C. Family Heart Ambassador

"The Family Heart Foundation is an invaluable resource for those who have been recently diagnosed with FH and those of us who have lived with the diagnosis for years." — Erin P. Family Heart Ambassador

“I finally found help after 50 years—an organization that talks to me about me and my HoFH. I have soldiers in my corner now.” — Patricia Y. U.S. Army Retired Family Heart Ambassador

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Family living with FH and high Lp(a)

We need your help.

Commit to a monthly donation and make a difference. Generous people like you make the life-saving work of the Family Heart Foundation possible. The Family Heart Foundation is relentlessly committed to preventing inherited heart disease and stroke. We believe those at high genetic risk for premature heart disease can live a full life if given accurate medical information and appropriate care. Help us achieve our mission by donating today! Every gift and every donor counts.

Donate online or by mail

Make a tribute or memorial gift

Become a monthly donor

Please make your charitable gift today. www.familyheart.org/donate

“I can't change my Lp(a), but I can control everything else—and I'm doing just that. Now, whenever someone mentions a family history of heart disease, I tell them, 'Get tested. It could save your life.'" — Barbara C. Family Heart Ambassador

“I am grateful for my familial hypercholesterolemia diagnosis. It gave what I have a name, not just high cholesterol. The diagnosis opened the door to new medicines, doctors, and a better way to manage my condition." — Julie S. Family Heart Ambassador

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Family Heart

Community Activation The Family Heart Foundation is a true partnership of individuals and families impacted by familial hypercholesterolemia (FH) and elevated lipoprotein(a) (Lp(a)) and the healthcare professionals who diagnose and treat them. We believe that more informed and empowered individuals will achieve better outcomes for themselves, for their families, and for those we serve in our communities.

and FH Facebook support groups, and tens of thousands who receive our weekly and monthly communications. We also engage a multitude of other volunteers who raise awareness through fundraising, work at Family Heart booths, help distribute educational materials, share their story through our blog, attend our events, and work hard to make early onset ASCVD due to FH and high Lp(a) a thing of the past.

We are a “patient-driven” organization. Founded and led by people with FH and elevated Lp(a), everything we do is based on our understanding of the needs and priorities of individuals impacted by genetic lipid disorders.

Thank you for attending this year’s Global Summit and being an important member of the Family Heart Community!

Our approach to everything we do involves bringing together data, medical expertise, and the patient perspective to make meaningful change in the lives of people with inherited lipid disorders. Over the past 13 years, the Family Heart Community has grown to include over 260 trained Family Heart Ambassadors, 500+ clinicians on our specialist map, 11,000+ members in our Lp(a)

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"I am reassured, enabled, and inspired that we can make a difference in the community health mission as well as take care of ourselves and be better advocates for our own health and our families." – Family Heart Ambassador

Help us build our FH & Lp(a) Community ▶

Connect patients to the Family Heart Foundation's resources.

▶

Invite the Family Heart Foundation to have an educational session in your workplace or local community.

▶

Help raise awareness on social media.

▶

Nominate someone to be a Family Heart Ambassador! 2025 FAMILY HEART GLOBAL SUMMIT |

THANK YOU

Family Heart Ambassadors for all you do!

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"Everyday we get closer to viable treatments for Lp(a), and better treatments for Familial Hypercholesterolemia. The journey gets easier as you learn more about the progress being made" — Peter P. Family Heart Ambassador

“What I didn’t know then is that I have HoFH... Many of the cardiologists I met with didn’t believe I was at elevated risk for a heart attack. But I knew something wasn’t right…” — Lulu T. Family Heart Ambassador

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“Our family history tells a sad story of untreated familial hypercholesterolemia and elevated Lipoprotein(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

“It’s heartening to witness the organization’s work around improving how we understand and treat Lp(a) and familial hypercholesterolemia (FH), and I feel incredibly grateful to support its efforts as a Family Heart Ambassador. While I once felt hopeless about the future, these days, I feel optimistic—for myself, for my child, and for all people with elevated Lp(a).” — Jenny W. Family Heart Ambassador 74 | 2025 FAMILY HEART GLOBAL SUMMIT

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Lp(a) Community Connect

Empowering, Motivating & Connecting Communities Elevating public awareness of lipoprotein(a) as a driver of cardiovascular disease through direct community engagement, education and screening. The Family Heart Foundation commitment since our founding has been to educate and empower individuals to increase their chances of managing their own health successfully. It is the position of the Family Heart Foundation that all Americans should be screened for Lp(a) in hopes of preventing or optimally managing atherosclerotic cardiovascular disease. Public trust in the healthcare and public health systems is at an all-time low in the US. At the same time, there is growing understanding of the role that individuals play in their own care. As representatives of the community we serve, Lp(a) Community Connect provides a unique opportunity at an important inflection point. Lp(a) Community Connect is designed to reach individuals in their communities to introduce Lp(a) as a novel risk factor while at the same time empower, educate and provide support to navigate their healthcare.

cardiovascular care because of continuing misconceptions that they are at lower risk due to their sex. 2. Black individuals have Lp(a) levels that are substantially higher than white or Hispanic individuals and they are less likely to receive appropriate cardiovascular disease management. In addition, studies show increased likelihood of inheriting a lipoprotein(a) metabolism disorder and higher Lp(a) if a mutation exists. 3. South Asians, research shows that 25% of South Asians have elevated levels of Lp(a) and higher rates of coronary heart disease than people of other origins. While South Asians Americans (descent traced back to Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan, and Sri Lanka) make up only 1.5% of the US population, it is the fastest growing group and are currently underrepresented in data studies.

Launched in 2025, this program aims to reach communities where the Lp(a) burden is highest: 1. Women as a whole, are more likely to have high lipoprotein(a) levels but are less likely to receive appropriate guideline-recommended

Partnering with volunteer nurses from Health Lore Community Outreach for in-person screening for Lp(a)

Lp(a) Community Connect Events Feedback from the events has been overwhelmingly positive and has resulted in screening over 200 community members for Lp(a). Each individual attendee, whether screened or not, is offered free Care Navigation services. Care Navigators provide encouragement, education, build trust and become a trusted resource for information and support. Events to date included: ▶

Life Science Women's Conference Tampa, FL – Education & Care Navigation

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Health Matters Community Health Fair Stanford, CA – Education & Care Navigation

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Bold & Balance Health Lore Community Outreach Red Oak, TX – Education, Screening & Care Navigation

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Ebenezer Baptist Church Health Ministry Collaboration Atlanta, GA – Education

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Ju-Ju's 4th Annual Block Party Madison, WI – Education, Screening & Care Navigation

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REACHUP Health Fair Tampa, FL – Education & Care Navigation

Lp(a) Screening at Bold & Balance event

Lp(a) Screening at Ju-Ju's 4th Annual Block Party

In-Person Screening for Lp(a) Direct engagement with communities, meeting them in their own space and seeking bidirectional understanding are the basic tenants of the program.

Family Heart Ambassador Jay Lugo providing education

We facilitate a network of Family Heart Ambassadors with a focus on supporting, sustaining and growing the Lp(a) Community Connect program. This network spans the country with over 260 passionate volunteers who are committed to raising awareness.

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"I am excited to have learned more, connected with others, and be able to share with patients and providers." — A Family Heart Ambassador 78 | 2025 FAMILY HEART GLOBAL SUMMIT

Annual Family Heart

Ambassador Training

024

For the past 13 years, the Family Heart Foundation has cultivated a robust group of over 260 Family Heart Ambassadors. These individuals who are impacted by familial hypercholesterolemia (FH) and high lipoprotein(a) (Lp(a)), raise their hand to volunteer and commit to the mission of raising awareness of these genetic disorders to improve the health of others in their community. To ensure success as a volunteer, the Family Heart Foundation holds

an annual 2-day training comprised of intense education of FH and Lp(a) along with public speaking training. Throughout the year, Family Heart Ambassadors are provided with ongoing resources, tools and support to help ensure success in the public and medical community. Interested in becoming a Family Heart Ambassador? Visit FamilyHeart.org/ambassador. 2025 FAMILY HEART GLOBAL SUMMIT |

Walk to More

Save

Hearts

People with FH and high Lp(a) are in a race against time – most do not even know it. The Family Heart Foundation hosts a Walk to Save More Hearts annually. Join people all across the United States to help us fight to save generations of families from heart disease, stroke, and peripherial arterial disease. Individuals and teams will choose their own challenge event from running to walking, or just asking your friends and

family for support. The possibilities are limitless and only require your imagination and a “can do” attitude. Walk in honor or in memory of a loved one, someone you know, or because you care about making a difference in the lives of others. The Family Heart Foundation will cheer you on, give you a virtual high five, and provide the support to make your Walk to Save More Hearts a success.

familyheart.org/walk

FH Awareness Day | September 24

Raising Awareness

of Familial Hypercholesterolemia and Lipoprotein(a) #KnowFH | #KnowLpa

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Lp(a) Awareness Day | March 24

The Family Heart Foundation established FH Awareness Day in 2012 and Lp(a) Awareness Day in 2022 to raise awareness of FH and Lp(a) and activate the community. Through national and local media, as well as social media engagement, we draw attention to these important inherited disorders and encourage everyone to join the movement.

Scan to find campaign toolkit and resources to share.

Family Heart Foundation LEAD Leveraging Evidence And Data for Pediatric Cholesterol Screening Initiative The Family Heart Foundation aims to improve health outcomes for individuals and families at highest risk of primary and secondary atherosclerotic cardiovascular disease (ASCVD) due to genetic drivers of ASCVD risk, including familial hypercholesterolemia (FH), elevated lipoprotein(a), also known as Lp(a), and polygenic lipid disorders. These patients tend to be younger, with earlier and more aggressive onset of ASCVD than the general population. For this reason, it is especially urgent to diagnose inherited lipid disorders and to achieve LDL-C treatment goals early in life. To date, most of these patients remain far from goal and at risk for primary or secondary ASCVD events.

2024 LEAD Pediatric Meeting

Healthcare is fragmented in the U.S. and childhood represents a distinct window of opportunity to identify children regardless of race, ethnicity, and socioeconomic status who have familial hypercholesterolemia (FH). The Leveraging Evidence And Data (LEAD) for Pediatric Cholesterol Screening Program incorporates the Family Heart Foundation’s expertise, real-world research, relationships with experts in the field, and community partnerships to help improve pediatric universal lipid screening in the U.S. 84 | 2025 FAMILY HEART GLOBAL SUMMIT

2024 LEAD Pediatric Meeting

In 2024, the Family Heart Foundation gathered 14 experts in the field of pediatric cardiology as well as 11 family practitioners, pediatricians, nurses and individuals with FH to discuss the impact of failed universal pediatric lipid screening guideline implementation and the lifesaving potential when screening is systematically implemented. Improved patient and clinician education as well as healthcare system processes were identified as ways to increase screening rates among U.S. children. A symposium paper was written and has recently been accepted for publication. In 2026, the LEAD for Pediatric Cholesterol Screening Program will continue to develop, recommend, and implement strategies for championing routine pediatric cholesterol screening, as currently recommended in the NHLBI, AHA, and AAP guidelines, to identify children and adolescents with FH and initiate treatment, thereby preventing premature disease and mortality due to ASCVD.

“My hope for the LEAD Pediatric initiative is for clinicians and parents to understand the importance and need for universal lipid screening in children.” Dr. Jonathan Flyer Pediatric Cardiologist, University of Vermont

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REGISTRY

CASCADE

Established in 2013

CASCADE FH Registry ®

CAscade SCreening for Awareness and DEtection of Familial Hypercholesterolemia

Principal Investigators Zahid Ahmad, MD Christie M. Ballantyne, MD Seth J. Baum, MD Yakubu Bene-Alhasan, MD, MPH Jason Bensch, MD Robert Block, MD, MPH Julie M. Clary, MD, MBA Sarah Clauss, MD Marina Cuchel, MD, PhD Sarah de Ferranti, MD, MPH Caroline deRichemond, CRNP P. Barton Duell, MD Antonio B. Fernandez, MD Robert D. Fishberg, MD Parveen Garg, MD Anne Carol Goldberg, MD Ashraf S. Harahsheh, MD Kerrilynn Hennessey, MD Lisa C. Hudgins, MD John Kane, MD Thomas G. Knickelbine, MD Joshua W. Knowles, MD, PhD Iftikhar J. Kullo, MD MacRae F. Linton, MD

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Gina G. Lundberg, MD Seth S. Martin, MD, MHS Jan McAlister, DNP Stephen Meng, MD Scott Merryman, MD Michele Mietus-Synder, MD Michael Wesley Milks, MD Joanna Mitri, MD, MS Patrick M. Moriarty, MD Pamela B. Morris, MD Karen Margaret Morrison, MD Marjan Mujib, MD Amy L. Peterson, MD Lee A. Pyles, MD Geetha Raghuveer, MD, MPH Stephanie Saucier, MD Kavita Sharma, MD Eveline Stock, MD Paul Thompson, MD Aaron Turkish, MD Jonathan Wagner, DO Donald Wilson, MD David Zidar, MD, PhD

The Family Heart Foundation (formerly the FH Foundation) established and maintains the CASCADE FH Registry. The Registry collects comprehensive longitudinal data to better understand outcomes of familial hypercholesterolemia diagnosis and treatment.

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GOAL Program

Getting On Appropriate Lipid Management 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 the management of LDL cholesterol (LDL-C) in 38 million high-risk Americans. Data from PPPLLL was presented at 3 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 less than 30% of high-risk individuals have their LDL-C controlled, and even if a person achieved their LDL target, they maintained their target for less than 6 months on average. Additionally, use of statins and other lipid-lowering agents (especially in combination with statins) was very limited and significant disparities in LDL-C control were identified by gender, race, income, and education. The GOAL Program was launched to engage all stakeholders (patients, payers, and practitioners) with a comprehensive educational campaign to improve awareness, treatment, and control of LDL-C in high-risk Americans.

Patients:

The new revised LDL Safe Zone™ website was launched on September 30, 2024 which is LDL-C Awareness Day. The site includes information to help people identify their personal LDL Safe Zone based on their level of risk as well as many tools and resources to help them navigate their journey to the LDL Safe Zone. If you haven’t had a chance to visit the new site (ldlsafezone.org), we invite you to check it out today!

In 2024, Family Heart Care Navigator, Aurora Sullivan, represented Family Heart at several large health fairs in the Tampa area and had a chance to highlight our resources.

Payers: The Family Heart Foundation held an educational session at the annual Academy of Managed Care Pharmacy (AMCP) Spring meeting in New Orleans, LA on April 16, 2024. Entitled, “From LDL-C to Lp(a): Opportunities to Reduce the Rising Tide of Cardiovascular Disease,” the session featured presentations by Family Heart Board member Dr. Keith Ferdinand and Dr. JaMasha Lacy, a community-based specialty pharmacist at Walgreens in New Orleans. Additionally, an LDL-C focused webinar in conjunction with AMCP was held on October 8. Another well-attended webinar in partnership with America’s Health Insurance Plan (AHIP) was hosted on December 5. Finally, on September 9, 2024 the Family Heart Foundation launched a payer report card webpage, which highlights the health plans and Pharmacy Benefit Managers that are doing the best (and worst) job of controlling LDL-C in their members with atherosclerotic cardiovascular disease (ASCVD). This report card data has been refreshed and submitted as an abstract to the AMCP Fall meeting taking place in Washington, DC in October 2025. These payer report cards are part of our larger effort to hold all stakeholders accountable to deliver better results for high- risk patients!

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Practitioners:

The Family Heart Foundation has undertaken a number of initiatives to raise awareness among healthcare practitioners (HCPs) of the importance of prioritizing LDL-C control. First, we developed a new Family Heart booth for use at medical meetings in order to engage HCPs and highlight our various LDL-C focused patient resources. This booth debuted at the 2023 American Society for Preventive Cardiology meeting in July, and we exhibited at an additional 8 medical meetings in 2024, including the American College of Cardiology, American Heart Association, National Lipid Association, American Academy of Pediatrics, and American Public Health Association. Care Navigator Aurora Sullivan and Director of Community Engagement, Jen Farnell, have done a superb job of representing Family Heart at many of these events!

In November 2024 at the American Heart Association meeting, the Family Heart Foundation recorded a multi-specialty Peer Exchange Roundtable on improving LDL-C control in partnership with HCP Live. Faculty for this session included Drs. Seth Baum, Erin Michos, Yehuda Handelsman, Lisa Maher, and Amy Peterson. Since it was released in late November, this Peer Exchange program has garnered over 55,000 views! In January 2025, we partnered with ReachMD on a podcast featuring Dr. Keith C. Ferdinand who reviewed an analysis from the Family Heart Database on control of LDL-C in people with atherosclerotic cardiovascular disease (ASCVD). To date, this podcast has been accessed by over 6000 HCPs.

Finally, we have partnered with Pri-Med on a series of in-person and virtual educational sessions focused on improving awareness, treatment, and control of LDL-C. At the Pri-Med South meeting in February 2025, we screened 454 clinicians for LDL-C and Lp(a) at the Family Heart booth and over 230 people attended our educational session featuring Dr. Heather Johnson. Quite a turnout!

At the Family Medicine Experience (FMX) meeting in September 2024, we screened over 650 clinicians for LDL-C and Lp(a) at the Family Heart booth and also held a standing-room only educational session on the importance of controlling LDL-cholesterol featuring Dr. James Underberg from NYU Langone Health and Family Heart Ambassador Madi Dabbas.

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Four additional events are planned with Pri-Med in the first half of 2025 to engage primary care practitioners: • Cardiology NOW Webinar (March 5) • Pri-Med West (May 6-8) • Pri-Med Primary Care NOW webinar (May 14) • Pri-Med Phoenix (May 21)

GOAL Program: 2025 Activities Past Meetings: Feb. 6-8 Mar. 5 May 8 – 10 May 14

Pri-Med South

Tampa, FL GOAL Expert Theater and Cholesterol Connect Screening

Pri-Med Cardiology NOW Webinar Virtual GOAL Expert Theater

Pri-Med West

Anaheim, CA GOAL Expert Theater & Cholesterol Connect Screening

Pri-Med Primary Care NOW Webinar Virtual GOAL Expert Theater

May 21-22

May 29 – Jun. 1 Jun. 19 – 21 Jun. 6 – 8

Pri-Med Phoenix

Pheonix, AZ GOAL Expert Theater

National Lipid Associated Annual Meeting Miami, FL

American Association of Nurse Practitioners San Diego, CA GOAL Expert Theater & Cholesterol Connect Screening

Heart in Diabetes Conference Philiadelphia, PA

Jul. 20 – 22

National Medical Association Annual Meeting

Jul. 22 – 25

American Society for Preventative Cardiology

Chicago, IL GOAL Expert Theater and Cholesterol Connect Screening Boston, MA

Upcoming Meetings: Oct. 5 – 9

American Academy of Family Practice Medicine (FMX)

Oct. 27 – 30

Academy of Managed Care Pharmacy Nexus Meeting

Nov. 8 – 10

American Heart Association Annual Meeting

Dec. 4 – 6

World Congress of Insulin Resistance

Anaheim, CA GOAL Expert Theater and Cholesterol Connect Screening

National Harbor, MD GOAL Expert Theater and Cholesterol Connect Screening New Orleans, LA Los Angeles, CA

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GOAL Program Payer Report Card Highlights Statin Metrics Over LDL Control Following the 2013 ACC/AHA guidelines, by 2016 the NCQA and CMS shifted to measuring statin prescription and adherence—rather than actual LDL-cholesterol outcomes—for patients with ASCVD. Performance Snapshot While over 80% of ASCVD patients receive statin prescriptions, fewer than 30% achieve the target LDL level of ≤ 70 mg/dL. The Core Issue Incentives currently align with prescribing statins, not ensuring patients reach LDL control—indicating a significant gap in outcomes versus prescribing behavior. Data Scope The analysis spans October 2016–June 2020, covering data from 197 million individuals across the U.S., including 22 million children.

Data base

TOP 10

BOTTOM 10

Plans for Achieving LDL-C <70mg/dL in ASCVD patients PL AN Tricare West Health Net Federal Services AO Medicare Express Scripts

PA TIENTS

4,827 (37.6) 20,867 (34.9)

Plans for Achieving LDL-C <70mg/dL in ASCVD patients

PA YMENT TYPE

PL AN

PA TIENTS

Commercial

Anthem BCBS

Medicare

Amerigroup

1,247 (22.6) 1,056 (22.3)

PA YMENT TYPE Mg Medicaid Mg Medicaid

United Health RX AARP

43,827 (34.8)

Medicare

Florida Blue

9,788 (21.6)

Commercial

Medi-cal

6,306 (34.6)

Mg Medicaid

Tenncare

991 (21.5)

Mg Medicaid

1,054 (21)

Mg Medicaid

Anthem BCBS

10,061 (33.9)

Medicare

Tricare East Region Humana Military

Health Partners of Philadelphia

11,858 (33.0)

Commercial

Molina Healthcare

2042 (20.8)

Mg Medicaid

Silverscript

42,678 (32.9)

Medicare

United Healthcare

2475 (20.2)

Mg Medicaid

BCBS

8,475 (32.1)

Medicare

Mercy Care Plan AHCCCS

1221 (19.8)

Mg Medicaid

Federal Employees

17,025 (32.1)

Commercial

Fidelis Care NY

1636 (18.8)

Mg Medicaid

Humana Health Plan

82,063 (31.8)

Medicare

1608 (16.3)

Mg Medicaid

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Who is at risk for a heart attack & stroke?

High cholesterol caused Aditi's father to have a massive heart attack at the age of 59. Inherited high cholesterol also led her to have a stroke at the age of 27. Lowering your LDL Cholesterol sooner and keeping it low puts you in LDL Safe Zone.

High LDL cholesterol can cause a heart attack & stroke at any age. Learn more at LDLSafeZone.org The Family Heart Foundation gratefully acknowledges MERCK for their financial support of the LDL Safe Zone Campaign:

Gold Level

The Family Heart Foundation gratefully acknowledges the sponsors for our GOAL program:

Foundation Level

Supporter Level

"I am not alone in my family. It turns out that my sister, my mom and my grandfather all have the condition. So, I can look to my mom and grandfather for advice, I can confide in them and learn more about what I have and how I can manage it." — Caity W. Family Heart Ambassador

"The Family Heart Foundation helped me find the right specialist to manage my children's high risk for heart disease." — Miranda C. Family Heart Ambassador

“Living with FH has been more than a medical journey; it is a silent battle often misunderstood, yet it has taught me strength and the value of understanding health. How does someone who looks petite, eats healthy, and exercises have high LDL? This is the question I get asked all the time." — Chantelle B. Family Heart Ambassador 94 | 2025 FAMILY HEART GLOBAL SUMMIT

“Because of my experience with my dad, I knew my LDL level of 550 mg/dL was not normal.” — Shubham D.

Family Heart Ambassador and Board Member

"After losing uncles, aunts, our father and now a brother to FH, our family sees that our high cholesterol and heart disease is driven by genetics. Now, we #KnowFH and we’re living longer, healthier lives.” — Eileen K. Family Heart Ambassador 2025 FAMILY HEART GLOBAL SUMMIT |

Introducing

Lp(a) AW(a)RE

™

Increasing Awareness & Screening for High Lipoprotein(a) The Family Heart Foundation is proud to announce the launch of Lp(a) AW(a)RE, a bold new initiative designed to tackle one of the most overlooked risks for heart disease and stroke: elevated lipoprotein(a), or Lp(a).

▶ Onsite Lp(a) screening at select conferences ▶ Lp(a)-focused analyses from the Family Heart Database® presented at national scientific meetings ▶ Digital education and webinars reaching more than 10,000 primary care clinicians

About 1 in 5 people have high Lp(a), a genetically inherited and independent risk factor for atherosclerotic cardiovascular disease (ASCVD). Elevated Lp(a) increases the likelihood of heart attack, stroke, and cardiovascular death—yet fewer than 2% of patients with ASCVD have ever been tested.

Payers ▶ Educational sessions at AMCP, AHIP, and NAMCP conferences ▶ Onsite Lp(a) screening at select meetings to highlight real-world impact ▶ Co-hosted payer webinar in partnership with AHIP or AMCP

Lp(a) AW(a)RE will change that. The initiative is designed to raise awareness, expand access to testing, and prepare the healthcare system for emerging treatments now in development. Targeted Interventions with Key Stakeholders: Individuals ▶ Launch of a new Lp(a) microsite with resources, screening access, and Care Navigation support ▶ Comprehensive awareness campaign focused on those most impacted, including people of South Asian and African descent, and women ▶ Free at-home screening kits to empower individuals to know their numbers Healthcare Practitioners ▶ Educational sessions at major primary care medical conferences (ACP, AAFP, Pri-Med, AOA, ADA, NMA, NBNA, AAPI, ACIO) 96 | 2025 FAMILY HEART GLOBAL SUMMIT

Policy Makers ▶ Publication of an Lp(a)-focused policy paper calling for universal screening ▶ Congressional briefing to elevate awareness and policy action ▶ Continued advocacy for the MINI Act and for CMS coverage of Lp(a) testing Why It Matters With Lp(a) AW(a)RE, the Family Heart Foundation is leading the way to shine a light on this hidden risk, expand testing, and build a healthcare environment ready to deliver solutions for the millions of families impacted by elevated Lp(a).

“My diagnosis took a while. It was a long time before I had a name for the high cholesterol that 'ran in my family.'" — Charlotte M. Family Heart Ambassador

“I now understand just how important it is to know your lipoprotein(a) level, especially if you have a family history of heart disease. It truly can be a matter of life and health.” — Karen M. Family Heart Ambassador

“My family history should have led my doctor to test for it, but nobody would have thought that I would have had a heart attack.” — Mike D. Family Heart Ambassador

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More than 17,000 kits distributed since launch

CHOLESTEROL CONNECT *Now available in spanish

Free Screening • Lipoprotein(a) • LDL Cholesterol

Free Care Navigation

CholesterolConnect.org The Family Heart Foundation gratefully acknowledges Amgen for their sponsorship of Cholesterol Connect. 98 | 2025 FAMILY HEART GLOBAL SUMMIT

Accelerating the diagnosis & optimizing care for LDL-C and Lp(a) across Family Heart Foundation initiatives Screening Kits Distributed Cholesterol Connect: 17,800 At-Home Screening Kits & Care Navigation GOAL: 2,000+ Education & In-person Screening at Payer & Practitioner Conferences Community Connect: 200+ Education, In-Person Screening & Care Navigation at Community Events

20,000+ screening kits and counting! Free Screening Trust Building Educating Supporting Building Community

2025 FAMILY HEART GLOBAL SUMMIT |

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“Reece’s diagnosis changed everything for our family. It might have saved all our lives.” — Jessica F. Family Heart Ambassador

“Getting tested doesn't mean something is wrong with you. It means you're strong enough to take control of your story. It means you care about your future." — Nikita W. Family Heart Ambassador

“I am grateful to the Family Heart Foundation for connecting me with educational resources to help me manage my high LDL-C and high Lp(a).” — Gail T. Family Heart Ambassador

“While being part of the FH Community has benefited me, what I’m excited about is how it benefits my daughter. There is a better future in store.” — Michael S. Family Heart Ambassador 102 | 2025 FAMILY HEART GLOBAL SUMMIT

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Saving generations of families from heart disease through timely identification and improved care of FH and elevated Lp(a). The FIND Method FLAG Family Heart Foundation partners with health systems to search electronic health records for clues indicating FH or elevated Lp(a) using a machine learning model.

IDENTIFY Individuals flagged as having probable FH or elevated Lp(a) are identified, evaluated, and diagnosed.

NETWORK Individuals are offered Family Heart Foundation support including education, community connection, and care navigation.

DELIVER Individuals, together with their healthcare team, begin actively manage their LDL cholesterol and other cardiovascular risk factors to improve health outcomes.

Flag, Identify, Network, Deliver™ Initiative

Find individuals with FH or elevated Lp(a)

The innovative Flag, Identify, Network, Deliver Initiative is designed as a catalyst to improve screening, identification diagnosis, support, and receipt of optimal care for individuals living with elevated lipoprotein(a), Lp(a), or familial hypercholesterolemia (FH). FIND utilizes evidence based scientific approaches to achieve these desired outcomes. The approaches and tools utilized include:

The Machine Learning Tool

• • • • •

Machine Learning Models Implementation Science Quality and Process Improvement Education and Awareness Collaborative Learning

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The Family Heart Foundation has created two machine learning models, one for FH and one for elevated Lp(a). These algorithms analyze healthcare system data (limited data set) in a HIPAA compliant way to identify individuals at high risk for these conditions. Both models were developed using over 350 variables, including diagnosis codes, procedure codes, prescription codes, lab values, gender, and age. The models were trained using data from over 221 million Americans with or at risk for cardiovascular disease in the Family Heart Database. The model output serves as an impetus for health systems to focus on undiagnosed individuals who may benefit from further

evaluation to determine if they have FH or elevated Lp(a)

FIND FH® Today Accomplishments to Date • •

• •

Improved FH assessments and a steady increase in diagnosis rates. A total of 1.8 M medical records across the 5 learning network sites were evaluated by the FIND FH machine learning model and 4476 individuals were flagged as high risk for FH. An FH diagnosis was established in 84% of patients who received a clinical evaluation 175 patients were newly diagnosed with FH through clinical evaluation as part of the FIND FH program.

Currently Underway • •

Several health systems are still reaching out to individuals flagged by the model. Additional publications to share learnings are still in progress.

FIND FH Parnters • Dartmouth-Hitchcock • Emory Healthcare • Ohio Health • Penn Medicine • UT Southwestern Medical Center

“It wasn't until the FIND FH program flagged my record and reached out to me that I realized that what I was experiencing was familial hypercholesterolemia. It was quite special because it was perhaps the only time in my life when medicine and healthcare found me instead of vice versa.” — Daniel H. Family Heart Ambassador

FIND Lp(a)

On September 23, 2024, the Family Heart Foundation, supported by funding from Novartis, launched the FIND Lp(a) program to accelerate the adoption of lipoprotein(a) screening and appropriate management in patients with cardiovascular disease, including those who traditionally are underserved in healthcare. The program’s learnings facilitate the creation of sustainable strategies for addressing elevated Lp(a) and the development of best practices and tools. FIND Lp(a) Today ACCOMPLISHMENTS TO DATE •

Executed partnership with five health systems.

•

Conducted Lp(a) testing barriers and facilitators research.

•

Involved Family Heart Ambassadors to provide unique patient perspectives.

•

Completed first learning sessions with all participating sites in attendance.

•

Created FIND Lp(a) machine learning model.

•

Tested and initially validated the machine learning model using retrospective data from the Family Heart Database

•

Health Systems have begun submitting their data for the machine learning model application.

The FIND Lp(a) program continues to grow, with additional Health Systems indicating interest. Patient outreach is anticipated before the end of the year. FIND Lp(a) promises to be a successful program significantly leading to improved health outcomes for patients with elevated Lp(a).

For more information visit familyheart.org/find-lpa

FIND Lp(a) Program Method

“We are excited to be partnering with the Family Heart Foundation on FIND Lp(a) to help build awareness, increase testing and save lives. Elevated Lp(a) affects one in five individuals, yet unfortunately, most of those individuals are undiagnosed. Not knowing you have a condition is not the same as not having that condition. Increasing awareness really does save lives.” – Julie Clary, MD, MBA Clinical Lead, Indiana University Health FIND Lp(a) Team

FIND Lp(a) Partners

Individuals living with high Lp(a)

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Can FH or high Lp(a) patients find you?

Put your practice on the map The #1 request the Family Heart Foundation receives is to help patients find a specialist in their area.

Register your practice if you are an FH or Lp(a) specialist 108 | 2025 FAMILY HEART GLOBAL SUMMIT FamilyHeart.org/find-specialist

“The Family Heart Foundation is an amazing resource of accurate, timely information as well as support. The Family Heart Foundation has given my family hope for the future.” — Rhiannon E. Family Heart Ambassador

We are here for

for Individuals with FH or High Lp(a)

FIND A SPECIALIST

CARE NAVIGATION CENTER

EDUCATIONAL MATERIALS

TOOLKITS

VIDEO RESOURCES

WEBINARS

PERSONAL STORIES

NEWS AND BLOGS

The Family Heart Foundation offers tools and resources like webinars, blogs, toolkits, and a directory of FH, HoFH, and Lp(a) specialists.

Visit FamilyHeart.org/resources

2025 Family Heart Global Summit

Speaker Bios Seth J. Baum, MD Chief Medical Officer Flourish Research Chairman of the Board Family Heart Foundation

Dr. Seth J. Baum, a graduate of Columbia College and Columbia College of Physicians and Surgeons, completed training in Internal Medicine, Cardiology, Interventional Cardiology, and Electrophysiology. He has directed and founded multiple Cardiac Catheterization and Electrophysiology laboratories. Dr. Baum has worked extensively in Integrative Cardiology, directing the Boca Raton division of Harvard’s Mind/Body Medicine Institute. Dr. Baum is a fellow of the American College of Cardiology, the American Heart Association, the American College of Preventive Medicine, the National Lipid Association, and the American Society for Preventive Cardiology. He is a Founding Physician/Scientist Member of the Society for Cardiovascular CT and is board certified in Cardiovascular CT. Dr. Baum served as treasurer of the International Society for the Study of Fatty Acids and Lipids. He founded and directs the Women’s Preventive Cardiology program at Boca Raton Regional Hospital. He is a past President of the American Society for Preventive Cardiology (ASPC). Dr. Baum has annually chaired the ASPC conference on cardiovascular disease (CVD) prevention on multiple occasions. Dr. Baum is the Secretary/Treasurer of the Board of Directors of the Family Heart Foundation. He sits on the American Heart Association’s Council for Epidemiology and Prevention as well as its Leadership committee, the Interdisciplinary Council for Prevention, and the Prevention Science Committee. He has written numerous peer reviewed papers as well as two books, The Total Guide to a Healthy Heart, and Age Strong, Live Long; Lessons from my Patients. In 2013 he was awarded Cleveland Heart Lab’s “Heart Award” for lifelong dedication to Preventive Medicine. In 2016, Dr. Baum founded and served as Chief Medical Officer of Excel Medical Clinical Trials, LLC, which was later recapitalized by Flourish Research—a consortium of clinicians dedicated to the safe and professional conduct of high-level scientific trials. He has served as Principal Investigator in more than 100 clinical trials spanning a broad range of disease states. Since 2022 he has been the Chief Scientific Officer for Flourish Research, a leading national clinical research company. Clinical Affiliate Professor of Medicine at FAU Medical School, Dr. Baum has a practice in Boca Raton, Florida that is devoted solely to Clinical Lipidology - he is board certified by the American Board of Clinical Lipidology - and Cardiovascular Disease Prevention. Dr. Baum also founded and directs the only lipoprotein apheresis program in southeast Florida. He lectures both nationally and internationally, emphasizing Familial Hypercholesterolemia, ASCVD prevention, lipid disorders and evolving therapies, Integrative Cardiology, sex distinctions in CVD, and omega-3 fatty acids.

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Speaker Bios

Roger S. Blumenthal, MD The Kenneth Jay Pollin Professor of Cardiology Professor of Medicine and Director John Hopkins Ciccarone Center for the Prevention of Cardiovascular Disease in Baltimore

Dr. Roger S. Blumenthal is the Kenneth Jay Pollin Professor of Cardiology, Professor of Medicine and the Director of the Johns Hopkins Ciccarone Center for the Prevention of Cardiovascular Disease in Baltimore, MD. Dr. Blumenthal graduated with honors from both the Landon School in Bethesda and the Johns Hopkins University. He received his medical degree from Cornell Medical College, where he was awarded the Weiss Prize for Excellence in Clinical Medicine. Dr. Blumenthal completed his Internal Medicine residency and Cardiology fellowship training at The Johns Hopkins University School of Medicine before joining the Hopkins Cardiology faculty. In 2018, he was the recipient of the Landon School Anthony Kupka Distinguished Alumnus Award. He was the 2019 recipient of the Society of Cardiovascular Computed Tomography (SCCT) Arthur S. Agatston Cardiovascular Disease Prevention Award for his work in selective use of cardiac CT to improve cardiovascular risk assessment. His principal clinical and research interests involve 1) strategies to improve cardiovascular risk assessment to identify those adults at elevated risk for their age and those at very low risk of future cardiovascular disease and 2) the optimal management of atherosclerotic vascular disease. He is an expert in the pathogenesis, treatment, and prevention of cardiovascular disease. Dr. Blumenthal was the principal developer of the Johns Hopkins Ciccarone Center for the Prevention of Cardiovascular Disease. Dr. Blumenthal is on the official national spokesperson panel for the American Heart Association (AHA). He has co-written more than 1,000 scientific publications dealing with many aspects of cardiovascular disease prevention and management. Together with Dr. Mariell Jessup, he was the co-chair of the ACC/AHA Guideline Task Force subcommittee that oversaw the updates of all of the prevention related guidelines (Blood Pressure, Cholesterol, Risk Assessment). Dr. Blumenthal & Dr. Donna Arnett were co-chairs of the 2019 ACC/AHA Primary Prevention of Cardiovascular Disease Guideline. He was a co-author the 2018 AHA/ACC/Multi-society Guideline on Cholesterol Management and the senior author on the 2019 AHA/ACC Special Report on the Use of Risk Assessment Tools to Guide Decision Making in the Prevention of Cardiovascular Disease. He is actively involved in updates of prevention guidelines. An experienced writer, Dr. Blumenthal is on the editorial board of Circulation. He is a Fellow of the American College of Cardiology, the American Heart Association’s Epidemiology and Prevention Council, the American Society of Preventive Cardiology (ASPC), the National Lipid Association (NLA), and the Society of Cardiovascular CT (SCCT). He was co-editor-in-chief of the textbook Preventive Cardiology – A Companion to Braunwald’s Heart Disease and the ASPC Manual of Preventive Cardiology. Dr. Blumenthal is very proud of helping to propel the careers of many leaders in Preventive Cardiology such as Drs. Khurram Nasir, Michael Blaha, Seth Martin, J. Bill McEvoy, Chiadi Ndumele, Erin Michos, Ty Gluckman, Samia Mora, Seamus Whelton, Parag Joshi, Ron Blankstein, Garima Sharma, Lili Barouch, Ramzi Dudum, Alex Razavi, and Jelani Grant. Dr. Blumenthal is a highly cited researcher with an h-index of 133 on Google Scholar. He has been named to the Stanford University-Elsevier List of the Top 2% most cited scientists worldwide as well as the 2024 Clarivate List of Most Highly Cited Researchers. In 2007, he was selected as one of the country’s Top 20 Cardiologists by Men’s Health Magazine and in 2017 he was named one of the nation’s Top 27 Cardiologists by Forbes.com. In 2024, he was selected by Medipocketusa.com as one of the Top 10 Best Cardiologists. 2025 FAMILY HEART GLOBAL SUMMIT |

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Speaker Bios In 2010, Dr. Blumenthal received the David M. Levine Excellence in Mentoring Award. In 2021, The Osler house staff voted him the Outstanding Faculty Mentor. The following year, he received the Department of Medicine Task Force on Women’s Academic Careers in Medicine Susan M. MacDonald, MD Sponsorship Award for promoting career advancement of faculty and fellows. Dr. Blumenthal is also a member of the American Clinical and Climatological Association and the Association of University Cardiologists. Dr. Blumenthal previously served as President of the Greater Baltimore Chapter of the American Heart Association and the Southeast Lipid Association. He was also Vice-President of the American Society of Preventive Cardiology and he is currently on its Board of Directors. For four years, he was Chair of the American College of Cardiology Prevention of Cardiovascular Disease Committee.

Boedeker, Jamison, and Mann Families Families living with FH and HoFH Ashleigh Boedeker, Allison Jamison, and Tommy Mann are siblings who grew up with a father who fought heart disease and high cholesterol his whole life. Their dad, Tom Mann, had his first heart attack at 28, and several more until undergoing a heart transplant at 49. In addition to their father, numerous other relatives experienced early heart disease, heart attacks, and premature death. Due to this history, all three siblings were tested for high cholesterol by the age of 6, and all three were diagnosed with familial hypercholesterolemia. Ashleigh, Allison, Tommy, and their families all serve as Family Heart Ambassadors for Awareness. Ashleigh lives with her husband and three children in Tulsa, OK. Her daughter, Greer Boedeker, is a senior in college and is also living with FH. Both Greer and Ashleigh are Ambassadors who have learned to advocate for themselves and treatment for their FH, as their concerns are often minimized or placed behind concerns around reproductive safety. They share their experiences with other women seeking care for FH for themselves and their children through the Family Heart social media groups. Allison lives with her husband and two children in Cincinnati, OH. Following two bypass surgeries, an aortic valve replacement, and a heart attack, Allison was diagnosed with homozygous FH at 35 years old. She found the Family Heart Foundation after her HoFH diagnosis, and became involved as an Ambassador for Awareness. She currently serves as the Vice Chair of the Family Heart Foundation. Her son, Jude Jamison, is a sophomore in college and raises awareness through social media posts and by partnering with his cousins in fundraising. Allison’s family chose adoption for their second child, Aven, who has also been diagnosed with FH. Tommy lives with his wife and two children in Dallas, TX, and his son, Patrick Mann, is also living with FH. Despite the family history, Tommy has had to fight for effective treatments to manage his LDL. Patrick is a junior in high school, and through his FH awareness efforts helped a good friend discover his own FH at age 9. Tommy and Patrick are developing a memorial scholarship program to honor Tom Mann and further raise awareness of FH.

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Speakers

W. Virgil Brown, MD Charles Howard Candler Professor of Medicine Emeritus Emory University School of Medicine Founding President, National Lipid Association

Dr. W. Virgil Brown received his BA degree from Emory School of Medicine, medical degree from Yale University and completed Internal Medicine residency at the Johns Hopkins University School of Medicine. He then joined the National Heart, Blood, and Lung Institute (NIH/NHLBI) in Bethesda, Maryland, where he worked with Drs. Donald Fredrickson and Robert Levy isolating and characterizing for the first time, four of the major proteins involved in the structure of the plasma lipoproteins. These proteins proved to be important in regulating the levels of blood triglycerides and cholesterol. After completing a fellowship in endocrinology and metabolism at Yale-New Haven Hospital, he joined the faculty at the University of California at San Diego, where he was Director of the Lipid Research Clinic. In 1978 he became Director of the Metabolic Disease Division and the Joseph Lowe and Louis Price Professor at Mt. Sinai School of Medicine in New York. In 1991, he returned to Emory as the Charles Howard Candler Professor of Medicine and Director of the Division of Atherosclerosis and Metabolic Disease. In 1998 he became Chief of Medicine at the Atlanta Veterans Administration Medical Center, retiring as Emeritus Professor in 2009, Dr. Brown’s research has improved the understanding of how various lipoproteins and enzymes work together in the blood to transport fat from one tissue to another. His work has also contributed to our understanding of the way dietary changes and medications alter the plasma lipoproteins and prevent arteriosclerosis. This research has produced over 400 manuscripts in the medical literature. In 1982, Dr. Brown chaired the Gordon Conference on Lipid Metabolism and the Metabolism Study Section of the National Institutes of Health (1984 to 1985). From 1991 through 1992 Dr. Brown served, as the National President of the American Heart Association. He was the first President of the Southeast Lipid Association (1998-2002), and the first President of the National Lipid Association (2002 to 2004). He organized and served as Editor and Chief of the Journal of Clinical Lipidology from 2007 through 2017 and served as President of the International Atherosclerosis Society (2010 to 2012). His honors include election to Chairman of the Faculty of the University of California, San Diego School of Medicine (1977–1978); Distinguished Professor of Medicine of the Year (1987) at Mt. Sinai School of Medicine); the “Gold Heart Award” for lifetime service to the American Heart Association (1996); President of the Emory University Senate (1997); the R. Bruce Logue Award for Lifetime Contribution to Medicine (2000) by the American Society of Preventative Cardiology; and the Master Physician Award of the American College of Physicians. In 2008, he was given the Distinguished Medical Achievement Award by the Emory U. School of Medicine Alumni Association and the Lifetime Achievement Award from the National Lipid Association in 2009. He delivered the Robert I Levy Memorial Lecture at the AHA national meeting in 2022.

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Speakers

Stephen R. Daniels, MD, MPH, PhD Professor and Chair, Department of Pediatrics University of Colorado School of Medicine Pediatrician-in-Chief and L. Joseph Butterfield Chair in Pediatrics Childrens Hospital of Colorado

Dr. Stephen R. Daniels is Professor and Chair of the Department of Pediatrics at the University of Colorado School of Medicine, and Pediatrician-in-Chief and L. Joseph Butterfield Chair in Pediatrics at Children’s Hospital Colorado. He received his MD from the University of Chicago; MPH from Harvard University; and PhD in Epidemiology from the University of North Carolina. Dr. Daniels’ area of expertise is preventive cardiology. His studies focus on understanding causes of blood pressure elevation and cholesterol abnormalities in children and adolescents, particularly the role of obesity. He has researched the development of structural and functional abnormalities in the heart and vascular system, including abnormalities in pediatric patients with diabetes mellitus, as well as the relationship of left ventricular hypertrophy to obesity and hypertension. Dr. Daniels has served on the Board of Childhood Obesity since 2010. He is co-author of Medical Epidemiology, an introductory textbook for medical students, and co-author and editor of Pediatric Prevention of Atherosclerotic Cardiovascular Disease. In 2015, he was awarded the Gold Heart Award by the American Heart Association—the AHA’s highest volunteer honor. Dr. Daniels was inducted into the Association of American Physicians in 2021. He has been a member of the Society for Pediatric Research (SPR) and the American Pediatric Society (APS). He served on the APS Nominating Committee from 2015 to 2016, the APS Council from 2017 to 2022, and was voted 2024 APS President Elect for 2025. Also in 2024, he was awarded the Robert Suskind and Leslie Lewinter-Suskind Pediatric Nutrition Lifetime Achievement Award from the American Society for Nutrition.

Melvin R. Echols, MD, MSCR Chief Health Equity Advancement and Inclusion Officer American College of Cardiology Associate Professo, Medicine in Cardiovascular Disease Morehouse School of Medicine Associate Director, Clinical Research Cardiovascular Research Institute Dr. Melvin Echols serves as the Chief Diversity, Equity, and Inclusion Officer at the American College of Cardiology, demonstrating a steadfast commitment to fostering inclusive healthcare. In addition to his role at the College, Dr. Echols is an Associate Professor of Medicine in Cardiovascular Disease at Morehouse School of Medicine, where he also serves as the Associate Director, Clinical Research, for the Cardiovascular Research Institute. Dr. Echols earned his medical degree from Morehouse School of Medicine in 2002 and subsequently honed his expertise in Internal Medicine and Cardiovascular Disease at Duke University by 2010. His clinical and research work primarily focuses on heart failure in underserved populations, significantly contributing to the understanding and treatment of this condition. Dr. Echols’s clinical practice is characterized by its emphasis on serving a diverse patient base. His research interests include heart failure, healthcare quality improvement, clinical trial equity, and addressing healthcare disparities. These efforts exemplify his dedication to advancing healthcare for all, particularly marginalized communities. Dr. Echols' affiliation with the Association of Black Cardiologists and his fellowships in several prestigious organizations, including the American College of Cardiology, attest to his es114 | 2025 FAMILY HEART GLOBAL SUMMIT

Speaker Bios teemed position in the medical community. His editorial influence extends to key journals like the Journal of Cardiac Failure and JACC-HF. Dr. Echols' leadership in the National Heart Failure Collaboratory and his editorial roles underscore his impactful contributions to cardiology. His position at the American College of Cardiology highlights his unwavering dedication to enhancing diversity, equity, and inclusion within the medical field.

James "Joe" Edwards, Sr., MBA Individual living with high Lp(a)

James "Joe" Edwards graduated from Emory University’s business school in 1956 and 1958. Many of his closest friends at the time were premed or medical students. They loved using big medical terms like Familial Hypercholesterolemia—words he could hardly pronounce, much less understand. Thanks to a recent free blood test from the Family Heart Foundation, he now understands that term all too well. Joe’s lipoprotein(a) is 237.88. He had a heart attack just three days after his 30th birthday. At 47, Joe underwent bypass surgery. Joe’s family history tells a similar story: his mother died at 52 from a blood clot after surgery; her father died at 35, likely from a heart attack or a stroke; her brother died at 62 following strokes that began in his 50s. His older brother also battled high cholesterol, had bypass surgery at 49, and later suffered a heart attack and stroke before passing at 87. Joe also had two cousins who suffered heart attacks in their 50s. Exercise, healthy diet, advancements in medication, a wonderful family, and an enjoyable career have remained central to Joe’s family all their lives. Since 1965, he has taken the cholesterol-lowering medicines available at the time. The statins of the 1980s made the biggest difference, and in 2016 he began a PCSK9 Inhibitor, later switching to another—both of which further improved his numbers. Even with elevated Lp(a), Joe’s long life stands as evidence of the power of exercise, healthy diet, bypass surgery, and continually improving medical therapies.

Jonathan N. Flyer, MD Associate Professor of Pediatrics University of Vermont Division Chief of Pediatric Cardiology University of Vermont Health Network

Dr. Jonathan Flyer completed his general pediatric training and chief residency at Yale-New Haven Hospital, followed by pediatric cardiology fellowship at New York-Presbyterian Hospital where he was named the Welton Gersony Research Fellow. He is a Fellow of the American College of Cardiology and the American Academy of Pediatrics, and president of the New England Congenital Cardiology Research Foundation. He is a grant funded principal investigator of a multicenter clinical registry to study medical management of severe bicuspid aortopathy. Since 2017, he has led the University of Vermont (UVM) pediatric cardiology population healthcare strategy to improve compliance with national guidelines for routine lipid screening through innovative subspecialty implementation of point-of-care testing, which is now expanding to health network primary care practices. In addition to patient care and clinical research, he is committed to innovative teaching and mentorship, and is recognized as an Expert Teacher by the Teaching Academy at the UVM College of Medicine. He happily resides in Vermont with his family. 2025 FAMILY HEART GLOBAL SUMMIT |

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Speaker Bios

Yehuda Handelsman, MD Endocrinologist Medical Director & Principal Investigator Metabolic Institute of America Scientific Advisory Board, Chair Diabetes, CardioRenal & Metabolism Institute

Dr. Yehuda Handelsman is an endocrinologist in private practice and Medical Director & Principal Investigator of the Metabolic Institute of America, and Scientific Advisory Board Chair for the Diabetes, CardioRenal & Metabolism Institute – DCMi a Think Tank. He is a nationally and internationally recognized authority on Diabetes, Lipids, Obesity, and its complications. A Master of American College of Endocrinology, Fellow of- American Heart Association, American Society of Preventive Cardiology, National lipid Association and American College of Physicians. He is Chair & Program Director Annual World Congress on Insulin Resistance, Diabetes and CVD and Heart in Diabetes Medical Congress and Chair of the DCRM – Multispecialty Practice Recommendations for the Management of Diabetes, Cardiorenal, and Metabolic Diseases; and the Early Intervention and Intensive Management of the DCRM patient. Dr. Handelsman is Editor of the International Lipid Forum and past president American College of Endocrinology, American Association of Clinical Endocrinologists and Pacific Lipid Association. He has chaired the AACE/ACE Guidelines, on Diabetes, Lipids, Obesity, lipodystrophy, Insulin Resistance and Cardiometabolic syndrome. He has published over 150 peer reviewed original manuscripts, books’ chapters and a book “Clinical Management of Cardiovascular Risk in Diabetes and Obesity”- publisher Professional Communications. Dr. Handelsman is associate and guest editor of several medical journals and has been listed repeatedly in "the Leading Physicians of the world”, “Top Doctors of Los Angeles,” and “Best Doctors of America.”

Kirsten Bjørklund Holven, PhD Professor Faculty of Medicine University of Oslo

Head of Research National Quality Network on Familial Hypercholesterolemia Oslo University Hospital

Professor Kirsten B. Holven is a professor at the Department of Nutrition, University of Oslo and head of research at the National Quality Network on Familial Hypercholesterolemia (FH), Oslo University Hospital. She has worked with research relating to patients with FH, for more than 25 years with particular focus on the impact on cholesterol exposure in children with FH and women's health issues focusing on women with FH, pregnancy and breastfeeding related issues, lipids through life cycle and dietary intervention studies. Professor Holven is head of research at the national advisory unit on FH where she is also involved in organizing national educational lipid meetings and creating informational material for both health personal and patients. She collaborates with the Norwegian FH patient organization and is member of the scientific advisory committee of the European FH Patient Foundation. She is a member of the EAS executive committee where she is co-chairing the educational committee together with prof. Evangelos Liberopoulos and she is the chairman of the Scandinavian Society of Atherosclerosis Research. She is the national contact person for the EAS Lipid Clinic Network and national lead of Norway for the EAS FHSC. She is in the organizing committee of the EAS Pediatric meeting 2026.

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Speaker Bios

Ijeoma Isiadinso, MD Preventive Cardiologist Associate Professor of Medicine, Division of Cardiology Medical Director, Emory Center for Heart Disease Prevention Emory University School of Medicine Founder & Director, Cardio-Rheumatology Clinic

Dr. Ijeoma Isiadinso is a Preventative Cardiologist and Associate Professor of Medicine with the Division of Cardiology at Emory University School of Medicine. She is the Medical Director of the Emory Center for Heart Disease Prevention, as well as, the Founder and Director of the Cardio-Rheumatology Clinic. Dr. Isiadinso previously served as the Director of the Emory Women’s Heart Center Screening Clinics at Decatur and Lithonia. Dr. Isiadinso earned a dual degree in Medicine and Public Health during medical school. She joined the faculty at Emory University School of Medicine in 2010 after completing her Internal Medicine Residency and Cardiology Fellowship at Temple University Hospital where she also served as Chief Fellow in her final year. She is Board Certified in General Cardiology, Nuclear Cardiology, Echocardiography. She serves on several national and regional committees including the American College of Cardiology, American Society of Preventive Cardiology (ASPC), American Heart Association and American Society of Nuclear Cardiology. She is the Co-Chair/co-organizer of the Familial Hypercholesterolemia National Awareness Campaign with the Association of Black Cardiologists (ABC). She was appointed as Co-Chair of both the Prevention Committee for the ABC and the ASPC Women in Preventive Cardiology Workgroup. Dr. Isiadinso is a member of the editorial board for Circulation: CV Imaging and the Journal of the American Heart Association. She was also an invited writing group member of the 2025 ACC/AHA Guideline on the Management of Patients with Acute Coronary Syndromes. Dr. Isiadinso is the site Primary Investigator for several clinical studies including the WARRIOR, Victorion-INCLUSION, and HORIZON trials. She is a dedicated educator and serves as the CME Course Co-Director for the Emory Symposium on Coronary Atherosclerosis Prevention and Education (ESCAPE) Conference and the Annual Emory Women and Heart Disease Symposium. Since 2012, she has been the clerkship director for the Preventive Cardiology Elective. Dr. Isiadinso is a national and internationally recognized speaker who has lectured extensively on lipid management, cardiovascular risk reduction and Lp (a). She was appointed as a participant in an LDL-C Quality Measure Roundtable discussion co-hosted by the National Lipid Association and the National Forum for Heart Disease and Stroke Prevention. In 2013, she was recognized as an American Heart Association Power to End Stroke Ambassador for her efforts to increase stroke awareness in the African-American community. For several years, Dr. Isiadinso has been recognized as a Castle Connolly Atlanta “Top Doctor”. She has also received the Castle Connolly Exceptional Women in Medicine Award annually since 2020. Dr. Isidinso leads the Family Heart Foundation's Flag, Identify, Network, Deliver (FIND-Lp(a) initiative at Emory and is passionate about preventing heart disease. Her special clinical interests are in the special clinical interests in the management of complex lipid disorders, cardiovascular disease in women and cardiovascular risk reduction in patients with systemic inflammatory conditions. Her research interests include addressing disparities in health care, community and preventive health, lipid disorders, women and heart disease, and program development and evaluation.

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Speaker Bios

Allison Jamison, MBA Assistant Dean of Admissions Daytime MBA program Duke's Fuqua School of Business Vice Chair and Treasurer of the Board Family Heart Foundation

Allison serves the Family Heart Foundation as a volunteer Family Heart Ambassador and as a member of the Board of Directors serving as the Vice Chair and Treasurer. She earned her BS in Commerce from the University of Virginia, and her MBA from the University of Texas at Austin. She currently works as the Assistant Dean of Admissions for the Daytime MBA program at Duke’s Fuqua School of Business.

Muin J. Khoury, MD, PhD Affiliate Professor, Epidemiology Department of Epidemiology University of Washington Founding Director Office of Public Health Genomics U.S. Centers for Disease Control and Prevention (CDC) Dr. Muin J. Khoury is the founding Director of the Office of Public Health Genomics at the U.S. Centers for Disease Control and Prevention. The Office was formed in 1998 to assess the public health implications of the Human Genome Project. Dr. Khoury served as the only director of this office until his retirement in 2024. During his 40-year career in public health, he led numerous national and international initiatives to help translate advances in genomics and other technologies into effective and ethical interventions that can improve population health and reduce health inequities. Throughout his career, he helped identify evidence-based genomic testing, family health history, and other genomic applications that can save lives and prevent disease, inform and educate public health, healthcare providers and the general public, about evidence-based genomic and precision health applications, and help integrate evidence-based applications into clinical practice and public health programs. Dr. Khoury has published extensively in the fields of genetic epidemiology, public health genomics and precision public health. Dr. Khoury is also the author of 4 books in genetic epidemiology and public health genomics. He is widely cited in the scientific literature and has won multiple scientific and service awards. He also serves on the editorial boards of multiple scientific journals.

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Speaker Bios

Joshua W. Knowles, MD, PhD Associate Professor of Medicine Stanford University Medical Center Former Chairman of the Board Family Heart Foundation

Dr. Joshua Knowles is an Associate Professor of Cardiovascular Medicine at Stanford Health Care focused on treating cholesterol, heart attack, atherosclerosis, heart murmur, cardiomyopathy, and the application of genetics to improve human health. Dr. Knowles completed his MD-PhD in Genetics and Molecular Biology at the University of North Carolina, Chapel Hill under the mentorship of Prof. Nobuyo Maeda and Nobel Laureate Oliver Smithies. He completed his Internal Medicine residency and Cardiology fellowship training at Stanford working with Dr. Tom Quertermous. Dr. Knowles is a physician-scientist with a focus on Familial Hypercholesterolemia (FH). As volunteer Chief Research Advisor of the Family Heart Foundation (FHF), he has helped lead the FHF efforts to establish a national patient registry (CASCADE FH), apply for an ICD-10 code for FH and employ cutting-edge “big-data” approaches to identify previously undiagnosed FH patients in electronic medical records (FIND FH). Dr. Knowles’ research involves discovery of genetic variants underlying cardiovascular disease, particularly coronary disease, and insulin resistance. He and his team are currently creating human induced pluripotent stem cell (iPSC) lines to model the genetic networks that produce disease. The goal is to translate these findings through a randomized trial to understand if it is possible to improve an individual’s risk by giving them information about their inherited risk of heart disease. He has published over 90 papers with research projects currently funded by the National Institutes of Health, the American Diabetes Association, the American Heart Association, and the Doris Duke Charitable Foundation.

Chuck Lane, DC Individual living with high Lp(a) Family Heart Ambassador Family Heart Foundation

Dr. Chuck Lane was raised in the west Texas town of Odessa. After earning his BS in Computer Science from the University of Oklahoma, he worked for Texas Instruments in their Avionics Systems Division working on the software for the Terrain Following Radar and FLIR systems used in the Stealth Fighter, the F15/F16, F111, and V22 Osprey. After seven years with TI, Dr. Lane moved on to pursue his degree in chiropractic at Parker University. He graduated cum laude in 1996 while attaining an additional BS in Anatomy. Since graduation, Dr. Lane has been in private practice for over 28 years in the DFW area. He joined Parker University as a Clinic Adjunct Doctor in May of 2022 while continuing to maintain his practice in Arlington, Texas. He has been an Ambassador for the Family Heart Foundation since March of 2025.

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Speaker Bios

Viet Le, DMSc, PA-C Associate Professor of Research, Intermountain Health Preventive Cardiology Physician Assistant Co-Director, Preventive Cardiology Clinic Intermountain Medical Center

Viet Le is an Associate Professor of Research at Intermountain Health and Preventive Cardiology Physician Assistant (PA) with over 20 years of practice. He has a bachelor's in exercise science/athletic training, a master’s degree as a Physician Assistant from the University of Utah School of Medicine, and his Doctor of Medical Science in Health Professions Education from Rocky Mountain University of Health Professions. He co-directs the Preventive Cardiology Clinic at Intermountain Medical Center, Intermountain Health, and serves as an Investigator on multiple sponsored/investigator-initiated cardiovascular clinical trials. He has authored/co-authored over 50 publications. His current healthcare foci are patient-centered care, improved shared decision-making processes, cardiovascular-kidney-metabolic health, and preventive cardiology. He is the past president of the Academy of PAs in Cardiology and Utah Academy of PAs, a past Co-Chair of the American College of Cardiology PA Work Group, and serves/has served on several ACC committees, including the ACC CardioSmart Committee. He is Editor-in-Chief of ACC CardioSmart.

Jeanine Roeters van Lennep, MD, PhD Internist of Vascular Medicine Associate Professor and Cardiovascular Preventation Head of the Lipid Clinic Erasmus University Medical Center Director, Netherlands Health Women Research and Innovation Center Rotterdam, Netherlands Dr. Jeanine Roeters van Lennep works as a vascular medicine internist at the Erasmus Medical Center, Rotterdam, the Netherlands. She is an associate professor of cardiovascular prevention and head of the Erasmus MC lipid clinic specialized in hereditary dyslipidemia which has a family-based approach treating both children and adults. The Erasmus MC is recognized as a leading centre for treatment of dyslipidemia especially Familial Hypercholesterolemia (FH) and expert center for rare dyslipidemias including homozygous FH and familial chylomicronemia syndrome. She also founded a multidisciplinary long-term follow-up cardiovascular prevention program for women who had preeclampsia. Dr. Roeters van Lennep is director of the Netherlands Health Women Research and Innovation Centre at Erasmus MC. Her scientific research is dedicated to cardiovascular prevention. Her special focus is to take into account the life course of women which has unique features such as the menstrual cycle, pregnancy and menopause. She received grants for her research by the Dutch Heart Foundation and the Dutch Research Counsil and received the Corrie Hermann Award by the Society of Dutch Female Physicians for her work. She is eager to share her enthusiasm on sex- and gender-specific medicine by organizing educational activities such as the 3-day Gender&Health Course and mentoring junior doctors and researchers. Dr. Roeters van Lennep is has broad leadership experience as board member of various scientific societies. She is vice president of the European Atherosclerosis Society, past-president of the Dutch Society of Vascular Medicine and member of the scientific advisory board of the Dutch Heart foundation as well as co-editor of Atherosclerosis Moreover. She has been chair of the first Dutch Guideline on Dyslipidemia and chair Horizon committee of cardiovascular medication for the National Institute of Health.

Speaker Bios

Pamela B. Morris, MD Professor of Medicine, Cardiology Paul V. Kramer Endowed Chair in Cardiovascular Disease Prevention Director, Seinsheimer Cardiovascular Health Program The Medical University of South Carolina Trustee, American College of Cardiology Specialty Editor, JACC Case Reports Dr. Pamela B. Morris is Professor of Medicine, Cardiology and the Paul V. Kramer Endowed Chair of Cardiovascular Disease Prevention at The Medical University of South Carolina. She serves as founder and director of The Seinsheimer Cardiovascular Health Program. She is a fellow of the American College of Cardiology, the American Heart Association, the American Society for Preventive Cardiology, the European Society of Cardiology, and the National Lipid Association. She was the Chair of the American College of Cardiology Annual Scientific Sessions in 2021 and 2022 and is currently a Trustee on the Board of the American College of Cardiology.

Diane MacDougall, MS VP of Science & Research Family Heart Foundation

Diane MacDougall, MS is Vice President of Science and Research at the Family Heart Foundation, where she collaborates with other internal and external researchers on analyses of the Family Heart Database, implementation of the Flag Identify Network Deliver (FIND) Program within health systems, and publication and presentation of novel Lp(a) and FH research findings. Before working at the Family Heart Foundation, Diane worked for several decades in clinical development, designing, conducting and summarizing Phase 1-3 clinical trials and clinical development plans for multiple lipid regulating drugs including statins, CETP inhibitors, HDL mimetics, an ACL inhibitor, and a thyroid mimetic at several biotech and pharmaceutical companies. She has a MS in Nutrition (focused on lipid metabolism) from the University of British Columbia.

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Speaker Bios

Steven E. Nissen, MD Chief Academic Officer Heart and Vascular Institute at the Cleveland Clinic Professor of Medicine and the Lewis Patricia Dickey Chair in Cardiovascular Medicine Learner College of Medicine

Steven E. Nissen MD MACC is the Chief Academic Officer for the Heart and Vascular Institute at the Cleveland Clinic, the Lewis and Patricia Dickey Chair and Professor of Medicine at the Cleveland Clinic Lerner College of Medicine. Dr. Nissen’s initial research focused on intravascular ultrasound (IVUS) imaging to assess progression and regression of coronary atherosclerosis, conducting more than a dozen trials, most published in the NEJM or JAMA. More recently, he has served as Study Chair for large global cardiovascular outcomes trials, most studying lipid modifying therapies. He is directing clinical trials of several therapies for patients with elevated lipoprotein(a) including pelacarsen, zerlasiran, and lepodisiran. Dr. Nissen’s contributions to scientific literature include 700 journal articles. He is co-author of a book for patients with heart disease, Heart411 published by Crown Books. He served as Chair of the Department of Cardiovascular Medicine at the Cleveland Clinic (2006-2019). In 2006-2007 he served as President of the American College of Cardiology (ACC), the professional society representing American cardiologists. In 2007, he authored a NEJM manuscript that demonstrated that the widely used diabetes drug rosiglitazone (AvandiaTM) raised the risk of myocardial infarction, eventually leading in 2010 to withdrawal of the drug in Europe and severe restrictions in the US. In July 2008, while serving as guest of the Endocrine and Metabolism Advisory Panel, he recommended a new approach for approval of diabetes drugs, which was ultimately adopted by the Agency in December 2008. Time Magazine selected Dr. Nissen as one of the world’s 100 most influential people. (2007) Beginning in 2015, he was named by Thompson-Reuters as one of the world’s most highly cited physician-scientist.

Børge Nordestgaard, MD, DMSc Professor, Department of Clinical Medicine University of Copenhagen Cheif Physician, Dept. Clinical Biochemistry Heriev and Gentofte Hospital Copenhagen University Hospital

Professor Børge Nordestgaard has studied and worked in Copenhagen, New York, and London. He has for more than 30 years continued his interest in the pathogenesis, diagnosis and treatment of familial hypercholesterolemia, hyperlipidemia, atherosclerosis and cardiovascular disease, and has written extensively on these conditions. He is chairing the Copenhagen General Population Study and is also a steering committee member of the Copenhagen City Heart Study and of several randomised intervention trials. Professor Børge G. Nordestgaard has supervised 54 Ph.D. students and 26 postdoctoral fellows, and has published 660 original articles and 101 reviews, book chapters, consensus statements, & editorials. His H-index is 109 and he has published 78 highly cited papers. Original articles include publications in New England J Med, Lancet, Nature, Science, Nature Genetics, JAMA, British Medical Journal, PLos Medicine, Eur Heart J, Circulation and JACC.

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Speaker Bios

Hilliard "Hilly" Paige, Jr. Cheif Innovation Officer Family Heart Foundation

Hilliard “Hilly” Paige, Jr. has over 30 years of leadership experience in the biopharmaceutical industry, including leading patient and professional advocacy functions, new product franchises, product development and commercialization teams, strategic planning and launch strategies for products in the cardiovascular and metabolic therapeutic areas. At the Family Heart Foundation, Hilly leads the GOAL initiative to engage healthcare practitioners, patients, payers, and policy makers to improve treatment and control of LDL-cholesterol in high-risk Americans. He also played a key role in the development and launch of the Cholesterol Connect program which provides free, at-home testing for LDL cholesterol and lipoprotein(a). In 2021, Hilly received the Spirit of the Heart Health Equity Champion award from the Association of Black Cardiologists. Prior to joining Family Heart, Hilly was the Vice-President of Marketing for Esperion Therapeutics. Prior to Esperion, Hilly held positions of increasing responsibility in Sales, US Marketing, Global Marketing, and Advocacy Relations at Parke-Davis, Novartis, Daiichi-Sankyo, and Amgen. He graduated from Vanderbilt University with a BS degree in Biology/Chemistry and lives with his wife and two sons in Newbury Park, CA.

Amy L. Peterson, MD, MS Pediatric Preventative Cardiologist Professor of Pediatrics Pediatric Preventative Cardiology Clinic University of Wisconsin School of Medicine & Public Health Founder and Director UW Health Kids Pediatric Preventive Cardiology Clinic Dr. Amy L. Peterson is a Professor of Pediatrics at the University of Wisconsin School of Medicine and Public Health. She is a board certified pediatric cardiologist and is also a certified Clinical Lipidologist from the American Board of Clinical Lipidology. She founded and directs the UW Health Kids Pediatric Preventive Cardiology Clinic. This clinic diagnoses and treats children with high cholesterol and cardiovascular risk factors in 6 locations around Wisconsin and Northern Illinois. She serves on the Scientific Advisory Board for the Family Heart Foundation, the American Academy of Pediatrics Committee on Nutrition, and is the ChairElect of the Young Hearts Cardiovascular Disease Prevention Committee of the American Heart Association. Dr. Peterson’s research interests focus on pediatric cholesterol screening as well as diagnosis and treatment of Familial Hypercholesterolemia in children. Her research team is currently investigating the feasibility of newborn screening for heterozygous and homozygous Familial Hypercholesterolemia.

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Speaker Bios

Traci Pine Individual Living with FH Family Heart Ambassador Family Heart Foundation

Traci Pine is a legal professional and mother of four from Madison, Wisconsin. After the sudden loss of her son due to undiagnosed FH, she became a Family Heart Ambassador. She is passionate about FH awareness and early detection through pediatric screening, honoring her son’s memory by raising awareness in her community, with a special focus on young athletes.

Raman Puri, MD, DM Interventional Consultant Cardiologist Cardiac Care Centre, New Delhi Lipid Association of India Delhi University

Dr. Raman Puri is a highly experienced Cardiologist based in Delhi, with a distinguished medical career spanning over 29 years. He holds advanced qualifications, including MD and DM, which underline his expertise in the field of cardiology. Dr. Puri is known for his patient-centric approach and utilizes the latest techniques and technologies to ensure optimal heart health for his patients. Fluent in both English and Hindi, he effectively communicates with a diverse patient population, providing clear explanations and compassionate care. As a part of the esteemed Apollo group, Dr. Puri is dedicated to keeping abreast of the latest advances in cardiovascular medicine, offering his patients cutting-edge treatments. His commitment to excellence and his deep understanding of cardiology makes him a trusted choice for individuals seeking specialized heart care in Delhi. Whether it's for routine check-ups or complex heart conditions, patients can rely on Dr. Puri's extensive knowledge and experience to guide them towards better cardiovascular health.

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Speaker Bios

Frederick (Derick) Raal, MMED, PhD, DSC Director, Carbohydrate and Lipid Metabolism Research Unit Faculty of Health Sciences, University of the Witwatersrand Johannesburg, South Africa

Professor Frederick (Derick) Raal is a Distinguished Professor in the Division of Endocrinology and Metabolism, as well as Director of the Carbohydrate and Lipid Metabolism Research Unit, University of the Witwatersrand, Johannesburg, South Africa. He is a NRF A-rated scientist and has authored or co-authored over 450 original articles and book chapters and has reviewed for several international journals including the New England Journal of Medicine, the Lancet, Circulation, and Atherosclerosis. He is on the Editorial Board of Atherosclerosis, a co-editor for Current Opinion in Lipidology and is a Board member of the International Atherosclerosis Society. Professor Raal is particularly interested in lipids and lipid disorders and has been integrally involved in the management of familial dyslipidaemia, particularly heterozygous and homozygous familial hypercholesterolaemia (FH). The major focus of his research remains the clinical, biochemical, genetic and therapeutic management of this condition and he continues to conduct studies with novel therapies such as PCSK9-inhibitors and ANGPTL3-inhibitors in this patient group.

Eric Sijbrands, MD, PhD Professor of Vascular Medicine Department of Internal Medicine Erasmus Medical Center Rotterdam, Netherlands

Professor Dr. Eric Sijbrands is a full professor of vascular medicine at the department of internal medicine of the Erasmus MC, the university hospital in Rotterdam. After he qualified as a medical doctor in 1990, he was given the opportunity to receive his training in internal medicine and perform scientific research at the Universities of Leiden and Amsterdam. He was one of the founding fathers of the worldwide first and largest population-based genetic diagnostic cascade screening program: the Dutch national molecular screening program for familial hypercholesterolemia. His work improved the insurability of patients with familial hypercholesterolemia globally: identified and on statins, they now pay regular premiums. He contributed to two recent paradigm shifts: the complications of most Mendelian disorders have complex aetiology and type 2 diabetes is a beta-cell disorder. In Web of Science, his H-index is 79.

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Speaker Bios Laurence S. Sperling, MD Chief Medical Officer Family Heart Foundation Katz Professor in Preventive Cardiology and Founder Emory Center for Heart Disease Prevention Professor of Global Health Hubert Department of Global Health Rollins School of Public Health at Emory University Dr. Laurence S. Sperling is the Founder and former Director of The Heart Disease Prevention Center at Emory (1997-2019). He served as the President of the American Society for Preventive Cardiology (20142016), served on the writing committee (2018) for the ACC/ AHA Guideline on the Management on Blood Cholesterol, and serves as Associate Editor for the American Journal of Preventive Cardiology, and the Chair of the World Heart Federation writing group on the Roadmap for Cardiovascular Disease Prevention among People Living with Diabetes. He served on the Writing Committee of the American Heart Association Cardiovascular Kid-ney Metabolic Health (CKMH) Initiative which has brought forth the importance of an integrated approach to prevention and treatment in this high-risk population. Dr. Sperling founded (in 2004) and directs the first and only LDL apheresis program in the state of Georgia and was the PI for The National FH Registry site at Emory. He has received awards for excellence in both teaching (including 4 Apple Awards and The Dean’s Teaching Award) and mentorship (Emory SOM 2018 Mentorship Award). He has received the Emory School of Medicine Alumni Award of Honor (2017), and the Pioneer in Prevention Award from the American Society of Preventive Cardiology in 2023. He is an elected member of the Association of University Cardiologists. He has been an investigator in several important clinical trials and has authored over 400 manuscripts, abstracts, and book chapters.

Sotirios (Sam) Tsimikas, MD Professor of Medicine/Cardiology Director of Vascular Medicine Sulpizo Cardiovascular Center Division of Cardiovascular Medicine University of California San Diego

Dr. Sotirios (Sam) Tsimikas is a practicing Board-Certified Cardiologist and Professor of Medicine and the Director of Vascular Medicine at the University of California San Diego School of Medicine. His obtained his Medical Degree from the University of Massachusetts Medical School, Internal Medicine training at the University of Massachusetts Medical Center, and separate fellowships in Cardiovascular Medicine, Atherosclerosis and Molecular Medicine and Interventional Cardiology at the University of California San Diego (UCSD) Medical Center. Dr. Tsimikas directs a basic and translational research laboratory focused on Lp(a) and their content of oxidized phospholipids as pro-inflammatory mediators of cardiovascular disease, with NIH-R01 funded research. He is the Founding Director of the Vascular Medicine Program within the Cardiovascular Medicine Division. He founded the UCSD “Lp(a) Clinic” as a novel paradigm to diagnose, manage and follow patients with elevated Lp(a). In partnership with Ionis Pharmaceuticals over 15 years, he has spearheaded the development of RNA therapeutics targeting Lp(a), first demonstrating pre-clinical proof-of-concept of potent Lp(a) reduction using antisense oligonucleotides direct to LPA mRNA, to clinical proof-of-concept in potently lowering Lp(a) levels in patients with elevated Lp(a) and to formally testing the Lp(a) hypothesis in the ongoing Phase 3 Lp(a) HORIZON cardiovascular outcomes trial that is assessing whether potent lowering of Lp(a) will reduce cardiovascular risk. Dr. Tsimikas has published his work in major medical journals, including NEJM, Lancet, Nature, Cell, JACC, Circulation, EHJ, and has over 400 original manuscripts, review articles and book chapters. 126 | 2025 FAMILY HEART GLOBAL SUMMIT

Speaker Bios

Nikita Wilburn, MS, BSN Individual living with high Lp(a) Family Heart Ambassador Family Heart Foundation

Nikita Wilburn, originally from Pensacola and now residing in the suburbs of Dallas, Texas, is a Certified Oncology Nurse with over 18 years of experience. She is also a Certified Health Coach, Personal Trainer, and Family Heart Foundation Ambassador. Nikita is passionate about sharing her story and raising awareness, empowering others to take charge of their health and live stronger, healthier lives.

Nanette K. Wenger, MD Professor of Medicine Division of Cardiology Emory University School of Medicine

Dr. Nanette K. Wenger is professor of medicine, Division of Cardiology, Emory University School of Medicine. In a legendary career that spans more than 50 years, Dr. Wenger’s steadfast dedication to reducing women’s disability and death from cardiovascular disease has made her one of the country’s most-respected experts on coronary heart disease in women. In 2009, the women’s health pioneer and renowned cardiologist received the Lifetime Achievement Award from the American College of Cardiology. Dr. Wenger’s association with the American College of Cardiology spans over half a century. A native of New York City and a graduate of Hunter College and the Harvard Medical School, Dr. Wenger received her medical and cardiology training at Mount Sinai Hospital before coming to Emory University School of Medicine and Grady Memorial Hospital in 1958. Since then she has been a trailblazer and icon in the field of cardiology as author and co-author of more than 1,300 scientific and review articles and book chapters. Although Dr. Wenger has earned dozens of awards in her celebrated career, perhaps her greatest professional achievement, and the one that has brought her international recognition, was changing a major paradigm in cardiology: the assumption that heart disease affects only men. A half a century ago heart disease was thought of as a “man’s disease”. Today, thanks to the pioneering clinical and research efforts of Dr. Wenger, it is known that cardiovascular disease is the number one killer of women in the United States accounting for 38 percent of all female deaths, more mortality than all forms of cancers combined. One of the main reasons for the disparity is heart disease symptoms can present differently in women than those in men. Dr. Wenger helped write the 2007 Guidelines for Preventing Cardiovascular Disease in Women.

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Speaker Bios

Katherine A. Wilemon Founder & CEO Family Heart Foundation

Katherine Wilemon is the Founder, President & CEO of the Family Heart Foundation. She lives with familial hypercholesterolemia and elevated lipoprotein(a). The month she turned 39 years old, she suffered a heart attack. Katherine experienced first hand the life-threatening risk people face when their medical condition goes undiagnosed and poorly managed. In 2011, after several years of advocating for greater awareness of FH in the U.S. and Europe within in the medical community and more broadly, she established the FH Foundation, which is now known as the Family Heart Foundation. The Family Heart Foundation, as the FH Foundation, developed innovative partnerships to accelerate the adoption of evidence-based diagnosis and treatment for individuals with FH, by harnessing the power of artificial intelligence, genomics and patient-driven research. The Foundation launched an ambitious real world data initiative to identify the 1.3 million individuals with FH in the U.S., established the largest longitudinal FH clinical registry in the world today, and applied for and received a national diagnosis code for FH. The Family Heart Foundation currently partners with patients, clinicians, scientists, and all participants in the healthcare ecosystem to develop lasting solutions to the barriers to diagnosis, treatment, and access to guideline recommended care for those born with high Lp(a) and FH. At the end of 2021, after 10 years, the Foundation expanded its mission to include elevated Lipoprotein(a) and changed its name to the Family Heart Foundation to reflect this broader mission. It is the Foundation’s goal to apply the incredible efforts and improvements made for individuals living with FH to those with high Lp(a). Highlights of Katherine’s strategic leadership of the the Family Heart Foundation to date, include: • • •

• •

• • • • • • •

Establishing FH Awareness Day (September 24) Establishing Lp(a) Awareness Day (March 24) Establishing and maintaining the national CASCADE FH® Registry in partnership with 40 clinical sites, to collect comprehensive longitudinal data to better understand outcomes of FH and high Lp(a) diagnosis and treatment Applying cutting-edge informatics and big data through the Flag Identify Network Deliver (FIND) program to identify and reach undiagnosed FH and high Lp(a) individuals in major health systems Hosting the annual Family Heart Global Summit® for scientists, physicians, thought leaders and key stakeholders, including people living with ASCVD, FH, and/or high Lp(a) to share research, insights, and best practices Advancing optimum clinical care of FH and high Lp(a) through healthcare provider educational program Applying for and securing ICD-10 Codes for FH and assisting with the ICD-10 Codes for high Lp(a) Accelerating FH diagnosis - from 1% to 30% of Americans with FH diagnosed in 10 years Building the FH and Lp(a) Communities, training volunteer Advocates, and serving thousands of patients with educational resources, peer support, and free care navigation Advocating for and shaping policies that impact the care of FH and high Lp(a) Authoring over 30 peer-reviewed publications Katherine has appeared in the NYT, Wall Street Journal, The Atlantic, Times, and print publications across the country to increase understanding of the complex breakdowns in healthcare that burden individuals at risk of accelerated cardiovascular disease. She regularly participates in national satellite media tours educating on familial hypercholesterolemia, high Lipoprotein(a), cholesterol lowering, and ASCVD and reaching millions by airing on multiple national TV and radio stations.

Speaker Bios

Richard Allen Willams, MD Clinical Professor of Medicine Univeristy of California, Los Angeles School of Medicine Founder Association of Black Cardiologists and Minority Health Institute

Dr. Richard Allen Williams is a cum laude honors graduate of Harvard University. He attended the State University of New York Downstate Medical Center where he received the MD degree. He later performed a Cardiology fellowship at Brigham and Women’s Hospital and Harvard Medical School. In 1972, he became Assistant Medical Director at the new Dr. Martin Luther King, Jr. Hospital where he secured a $3 million dollar grant to establish the King-Drew Sickle Cell Center, of which he became the Director. Later, he moved to the West Los Angeles VA Medical Center and became Chief of the Heart Station and Head of the Cardiology Department. At present he is Clinical Professor of Medicine at the UCLA School of Medicine (full Professor) and was the first African American to achieve that status in the UCLA Department of Medicine. He also received a Lifetime Achievement Award from Harvard Medical School. In addition, he was privileged to present a scientific paper at the Oxford Round Table. Dr. Williams is considered an international expert on hypertension, healthcare disparities, dyslipidemia, diabetes, obesity, heart failure, and sudden cardiac death. He was recently honored by the American Heart Association from which he received the prestigious LifeSaver Award. He has also received the Scroll of Merit and Distinguished Leadership Award from the National Medical Association, their highest honor. He has authored eight books, numerous book chapters, several scholarly articles, and dozens of scientific papers. He wrote the ground-breaking Textbook of Black-Related Diseases (McGraw-Hill) in 1974 and the critically acclaimed Healthcare Disparities at the Crossroads of Healthcare Reform (Springer, 2011). His ninth book, Blacks in Medicine: Clinical, Demographic, and Socioeconomic Correlations (Springer) is in progress. Dr. Williams has a legacy of community service including serving on the CDU Board of Directors, the Board of Directors of the American Heart Association, the Advisory Board of the Community Health Councils, and the California Jazz Foundation. He has also shown his philanthropic side by participating in National Medical Fellowships and by establishing three separate scholarship funds in his name to benefit African American medical students across the country.

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2025 Family Heart Global Summit Program