2023 Family Heart Global Summit Program by familyheartfoundation

1 | 2023 FAMILY HEART GLOBAL SUMMIT

Table of Contents

Through a Wider Lens: Lipid Management Across Populations and Lifetimes Letter from our Founder

About the Family Heart Foundation

Our Mission

Timeline

Family Heart Foundation Team

Family Heart Foundation Board of Directors

Family Heart Foundation Scientific Advisory Board

Driving Research

Family Heart Foundation Research Publications

Family Heart Foundation Research Abstracts

Homozygoud familial hypercholesterolemia in the U.S..

Family Heart Community in Action

FH and Lp(a) Awareness Day

CASCADE FH® Registry Site Map

In the News

PPPLLL Analysis

Are you in the Safe Zone?

GOAL Program

LDL Safe Zone Campaign

FIND™ Program (FIND FH® and the launching of FIND Lp(a)™)

Family Heart Foundation Care Navigation Center

Familial Hypercholesterolemia Global Call to Action

Celebrating the Life of Dr. Avedis K. Khachadurian

2023 Pioneer Award—Drs. Anne Tybjærg-Hansen and Børge G. Nordestgaard

2023 Keynote Speakers—Drs. Ron Adner and George Mensah

Co-chairs and Co-hosts

Meeting Agenda

Sponsors

Speaker Biographies

2023 FAMILY HEART GLOBAL SUMMIT |

Letter from our Founder

Welcome to the 9th annual Family Heart Global Summit, Through a Wider Lens: Lipid Management Across Populations and Lifetimes. This year’s event will focus on two intersecting questions. First, why do many innovations in healthcare (scientific discoveries, novel therapies, process improvements) fall short of their life-saving potential in the real world? Second, how can we address the uneven uptake of innovations in cardiovascular care that disproportionately fail to benefit non-white populations and women? Answering these questions will help us accomplish big goals. Over the next two days, we will study and challenge the forces within and beyond the confines of the clinic that determine how healthcare is delivered and who benefits most. We have a wealth of science and a host of highly effective lipid lowering therapies, with more in the pipeline. However, we must admit that we are struggling to live up to this moment in history. The promise of innovation is only as good as its implementation. In the case of healthcare, the stakes are high and the failures reverberate through the lives of those who need them most. Join me in allowing yourself to look through a new lens, a wider lens that includes all stakeholders. I hope we can question the assumptions and quell the doubts that keep us stuck in the status quo. In fact, we cannot allow ourselves to do any less. Sincerely,

Katherine A. Wilemon Founder & CEO

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Family Heart Global Summit COLLABORATING FOR IMPACT

About

Saving more families, more hearts. For the last 11 years the Family Heart Founda-

with over the past decade. Research shows that

tion, formerly known as the Familial Hypercho-

1 in 250 adults and children have FH, and 1 in

lesterolemia Foundation (FH Foundation), has

5 have elevated Lp(a). Many people have both

directly served the needs of individuals and

conditions, compounding their risk.

families at high risk for heart disease due to FH, including HoFH, 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 iden-

In recent years, we have increasingly addressed

tification and treatment of people with these

the needs of those with elevated Lp(a). After

inherited lipid disorders Our history of success

a decade of success as the FH Foundation, we

positions us to provide education, awareness,

recently expanded our mission and changed

advocacy, and support to millions more families

our name to the Family Heart Foundation. Our

at risk, and we engage extensively on policy is-

expanded mission continues to help those im-

sues related to pediatric screening, prior autho-

pacted by FH, and also aims to help a broader

rization reform, PBM transparency, and quality

population at risk for heart disease and stroke

measures.

due to elevated Lp(a). These two conditions, FH and high Lp(a), have much in common: both are genetic disorders, both can cause early cardiovascular disease, but 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

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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 elevated Lp(a) and FH.

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 650 healthcare providers from 40 countries on our Specialist Map.

Journal Journal

Family Heart Foundation has published our research in 38 scientific journal articles in the last 11 years.

Over 26,000 individuals are part of our social media communities.

2023 FAMILY HEART GLOBAL SUMMIT |

Support your patients. FREE patient education resources are available through our website, and can be ordered in nine different languages.

... Educational Materials

REGISTRY

CASCADE

Patient Forums

Abstracts & Publications

Webinars & Videos

How many familial hypercholesterolemia (FH) patients are in your practice? The FH Foundation’s FIND FH® Heat Map

ICD-10 Codes for FH approved 1.3 million Americans with probable FH mapped through FIND FH

Estimated Number of Individuals with Probable FH by Zip Code

CASCADE FH® Registry The only national registry of FH patients in the United States. www.theFHfoundation.org/fh-research/registry granddaughter

Thank you for joining healthcare providers, researchers and government agencies to turn the tide against FH. father

Population Map 2,120 to 18,631 a 501(c)3 non-profit research and advocacy organization

The FH Foundation The FH Foundation is a patient-centered non-profit organization dedicated to research, advocacy, and education of all forms of familial hypercholesterolemia (FH). Our mission is to raise awareness and save lives by increasing the rate of early diagnosis and encouraging proactive treatment.

1,160 to 2,119 580 to 1,159 230 to 579 0 to 229

FIND FH Lab & Claims Algorithm Developed by The FH Foundation FIND FH is not screening or diagnosing FH. That is the sole responsibility of the health care provider. Claims Data Source: IMS Health Real World Data: LRx longitudinal prescriptions and Dx medical claims

Find the FH patients in your practice

(844) 434-6334 findfh@theFHfoundation.org www.theFHfoundation.org/find-fh 1 Wiegman A, et al. Familial hypercholesterolaemia in children and adolescents: gaining decades of life by optimizing detection and treatment. Eur Heart J. 2015;36:2425–2437. ; 2 Gidding SS, et al. The agenda for familial hypercholesterolemia: a scientific statement from the American Heart Association. Circulation. 2015;132:2167–2192. ; 3 Stempel H, et al. Referral patterns and cascade screening for familial hypercholesterolemia in a pediatric lipid clinic. J Pediatr. 2016 Nov;178:285-287. doi: 10.1016/j.jpeds.2016.08.016. ; 4 Ned RM and Sijbrands EJ. Cascade screening for familial hypercholesterolemia (FH). PLoS Curr. 2011;3:RNN1238. ; 5 Marks D, et al. A review on the diagnosis, natural history, and treatment of familial hypercholesterolaemia. Atherosclerosis. 2003;168:1–14. ; 6 Knowles J, et al. Reducing the burden of disease and death from familial hypercholesterolemia: A call to action. Am Heart J. 2014;168:807–811. ; 7 Jillinger, et al. American Association of Clinical Endocrinologists and American College of Endocrinology guidelines for management of dyslipidemia and prevention of cardiovascular disease. Endocrine Practice. 2017; 23:1-87. ; 8 FH Genomics Application Toolkit. Centers for Disease Control and Prevention. 2014. https://www.cdc.gov/genomics/implementation/toolkit/fh_1.htm.

Familial Hypercholesterolemia

underdiagnosed, undertreated, and life-threatening The FH Foundation® Raising Awareness. Saving Lives.

11 years of raising awareness and saving lives.

CASCADE FH Registry online self-enrollment portal in multiple languages

First use of #KnowFH #KnowFH for FH Awareness Day

1st annual FH Awareness Day

FDA Advisory Committee Meeting for Lomitapide and Mipomersen

2011

FOCUS Initiative launched

DO YOU

Launched Family Heart Database™

FH Global Summit: Translational Medicine in FH

FH Global Summit: Bridging the Gaps

Pioneer Award: Michael S. Brown, MD & Joseph L. Goldstein, MD

2015 2014

1st Advocates for Awareness training

FH Foundation founded

2016 ®

F lag

Ident i f y

Network

Del i v er

FIND FH initiative launched

FA M I L I A L H Y P E R C H O L E S T E R O L E M I A

1st annual FH Global Summit: Awareness to Action

REGISTRY

CASCADE

CASCADE FH Registry established

HoFH Community established FDA Advisory Committee Meeting for PCSK9 inhibitors 1st FH Awareness outdoor campaign

FH Global Summit: FH at the Crossroads

1st Annual Pioneer Award: Avedis K. Khachadurian, MD 6 | 2023 FAMILY HEART GLOBAL SUMMIT

Joined the Genomics and Population Health Action Collaborative (GPHAC)

Application for FH ICD-10 Codes

2013 2012

1st Annual Advocacy Visit to Capitol Hill

Timeline Family Heart Foundation Research: Identifying Disparities for Individuals with FH Family Heart Foundation Research: Children With HoFH Miss Out On Decades Of Life-Saving Treatment

JOURNAL OF THE AMERICAN COLLEGE OF CARDIOLOGY

VOL. 72, NO. 6, 2018

ª 2018 BY THE AMERICAN COLLEGE OF CARDIOLOGY FOUNDATION PUBLISHED BY ELSEVIER

THE PRESENT AND FUTURE JACC SCIENTIFIC EXPERT PANEL

Clinical Genetic Testing for Familial Hypercholesterolemia JACC Scientiﬁc Expert Panel Amy C. Sturm, MS,a,* Joshua W. Knowles, MD, PHD,b,c,* Samuel S. Gidding, MD,d,* Zahid S. Ahmad, MD,e Catherine D. Ahmed, MBA,c Christie M. Ballantyne, MD,f Seth J. Baum, MD,c,g Mafalda Bourbon, PHD,h,i Alain Carrié, MD, PHD,j Marina Cuchel, MD, PHD,k Sarah D. de Ferranti, MD, MPH,l Joep C. Defesche, PHD,m Tomas Freiberger, MD, PHD,n,o Ray E. Hershberger, MD,p G. Kees Hovingh, MD, PHD,q Lala Karayan, MPH,c Johannes Jacob Pieter Kastelein, MD, PHD,q Iris Kindt, MD, MPH,c Stacey R. Lane, JD, MBE,c Sarah E. Leigh, MSC, PHD,r MacRae F. Linton, MD,s Pedro Mata, MD, PHD,t William A. Neal, MD,c,u Børge G. Nordestgaard, MD, DMSC,v,w Raul D. Santos, MD, PHD,x Mariko Harada-Shiba, MD, PHD,y Eric J. Sijbrands, MD, PHD,z Nathan O. Stitziel, MD, PHD,aa Shizuya Yamashita, MD, PHD,bb,cc Katherine A. Wilemon, BS,c,y David H. Ledbetter, PHD,a,y Daniel J. Rader, MD,c,dd,y

Clinical Utility of Genetic Testing Statement published

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

FH Can’t Wait educational campaign

Family Heart Foundation Research: Few physicians screen for elevated Lp(a)

Convened by the Familial Hypercholesterolemia Foundation JACC JOURNAL CME/MOC/ECME This article has been selected as the month’s JACC CME/MOC/ECME activity, available online at http://www.acc.org/jacc-journals-cme by selecting the JACC Journals CME/MOC/ECME tab. Accreditation and Designation Statement The American College of Cardiology (ACC) is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. The ACC designates this Journal-based CME activity for a maximum of 1 AMA PRA Category 1 Credit(s)�. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Successful completion of this JACC Journal CME/MOC activity, which includes participation in the evaluation component, enables the participant to earn up to 1 Medical Knowledge MOC point in the American Board

achieved to obtain credit. 4. Complete a brief evaluation. 5. Claim your CME/MOC/ECME credit and receive your certificate electronically by following the instructions given at the conclusion of the activity. CME/MOC/ECME Objective for This Article: Upon completion of this activity, the learner should be able to: 1) recognize the benefits of genetic testing for familial hypercholesterolemia; 2) apply genetic testing results in clinical care for familial hypercholesterolemia; and 3) demonstrate understanding of alternative etiologies for a familial hypercholesterolemia phenotype in the setting of negative genetic testing for FH. CME/MOC/ECME Editor Disclosure: JACC CME/MOC/ECME Editor Ragavendra R. Baliga, MD, FACC, has reported that he has no financial re-

gram. Participants will earn MOC points equivalent to the amount of CME

lationships or interests to disclose.

credits claimed for the activity. It is the CME activity provider’s responsibility to submit participant completion information to ACCME for the purpose of granting ABIM MOC credit. Clinical Genetic Testing for Familial Hypercholesterolemia: JACC Scientiﬁc Expert Panel will be accredited by the European Board for Accreditation in Cardiology (EBAC) for 1 hour of External CME credits. Each participant

Author Disclosures: Ms. Sturm has served on scientiﬁc advisory boards for Clear Genetics and Genome Medical. Dr. Knowles has served as the chief medical advisor for the Familial Hypercholesterolemia Foundation; and has received funding from an American Heart Association National Innovative Research Award and the Doris Duke Charitable Trust. Dr. Gidding has served as a consultant for Regenxbio. Dr. Ahmad has performed

should claim only those hours of credit that have actually been spent in the

research for the National Institutes of Health and Regeneron; has served as

educational activity. The Accreditation Council for Continuing Medical

a speaker for Amgen, Sanoﬁ, and Akcea; and has served on advisory boards

Education (ACCME) and the European Board for Accreditation in Cardiology (EBAC) have recognized each other’s accreditation systems as subListen to this manuscript’s

3. Answer the post-test questions. A passing score of at least 70% must be

of Internal Medicine’s (ABIM) Maintenance of Certiﬁcation (MOC) pro-

stantially equivalent. Apply for credit through the post-course evaluation.

for Sanoﬁ and Akcea. Dr. Ballantyne has received grant/research support (all paid to institution, not individual) from Abbott Diagnostic, Amarin, Amgen, Esperion, Ionis, Novartis, Pﬁzer, Regeneron, Roche Diagnostics,

audio summary by

While offering the credits noted above, this program is not intended to

and Sanoﬁ-Synthelabo; and has served as a consultant for Abbott

JACC Editor-in-Chief

provide extensive training or certiﬁcation in the ﬁeld.

Diagnostics, Amarin, Amgen, AstraZeneca, Boehringer Ingelheim, Eli Lilly,

Dr. Valentin Fuster. Method of Participation and Receipt of CME/MOC/ECME Certiﬁcate

Esperion, Ionis, Matinas BioPharma Inc., Merck, Novartis, Novo Nordisk, Pﬁzer, Regeneron, Roche Diagnostics, and Sanoﬁ-Synthelabo. Dr. Baum

To obtain credit for JACC CME/MOC/ECME, you must:

has served on scientiﬁc advisory boards, provided consulting, and

1. Be an ACC member or JACC subscriber.

performed clinical research for Amgen, Sanoﬁ/Regeneron, Esperion,

2. Carefully read the CME/MOC/ECME-designated article available online and in this issue of the Journal.

ISSN 0735-1097/$36.00

Akcea, AstraZeneca, Boehringer Ingelheim/Lilly, Novo Nordisk, and Gemphire; and has served as a speaker for Amgen, Boehringer Ingelheim/

https://doi.org/10.1016/j.jacc.2018.05.044

Convened FH Global Call to Action

FH Global Summit: Familial Hypercholesterolemia: Driving solutions to prevent inherited cardiovascular disease

FH Global Summit: Familial Hypercholesterolemia: Implementation Science for Health Impact

T H E F H F O U N DAT I O N

Pioneer Award: Roger R. Williams, MD

2017

GOAL + PPPLLL Program launch “‘Runs in the Family’ is not a diagnosis” Campaign

Pioneer Award: Robert A. Hegele, MD, FRCPC, FACP

2019 2018

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

2021 2020

1st annual #Race4FH

FH Global Summit: FH as a Prototype for Precision Public Health

FH Global Summit: Familial Hypercholesterolemia: Diagnosis, Treatment, & Access Across Diverse Populations

Pioneer Award: Catherine Boileau, PharmD, PhD

Pioneer Award: Nanette Wenger, MD

Effect of Access on Cardiovascular Outcomes published

Meeting of Americas

4th Annual Advocacy visit to Capitol Hill

FH Diagnosis app launched

FH Global Call to Action initiated

FH Awareness Day reaches 30 million people around the world

Family Heart Foundation Research: FH Diagnosis Increases to 30%

FH Global Call to Action published

FIND FH validated in multiple institutions

2022 10 Year Anniversary: Expanded mission to include Lp(a) and became the Family Heart Foundation Launched Care Navigation Center

New Race for FH and Lp(a)

Publication - COVID-19 associated risks of myocardial infarction in persons with FH with or without ASCVD

Family Heart Foundation Team

Katherine A. Wilemon Founder and CEO

George Blike, MD

Diane MacDougall

Chief Quality and Value Officer

Barbara Gladders

Hilly Paige

Chief Innovation Officer

Allison Hawke

Susan Marie Seim

Isabelle Bryan

Mackenzie Ames

Eric P. Tricou

Mary Card, MBA, RD

Senior Clinical Associate

Director of Operations for FIND

Care Navigator

Chief Medical Officer

VP of Science & Research

Senior Data Analyst

Project Manager

Mary P. McGowan, MD

Content Manager

Funke Oladele

CLN Coordinator

Grace Badiali

Administrative Assistant

Creative Director

Dairne Mayer

Finance Manager

Jacklyn Stephens

Graphic Design Intern

Board of Directors

Daniel J. Rader, MD

Chairman of the Board Chief Scientific Advisor

Joshua W. Knowles, MD, PhD Vice Chairman of the Board Chief Research Advisor

Allison Jamison, MBA Treasurer

Seth Baum, MD

Stacey Lane, JD, MBE

Keith Ferdinand, MD

Brian S. Mittman, PhD

Courtney Riley, MD

Katherine A. Wilemon

Board Member

Board Member Founder & CEO

2023 FAMILY HEART GLOBAL SUMMIT |

FH Scientific Advisory Board

Zahid Ahmad, MD

UT Southwestern Medical Center

Christie Ballantyne, MD

Linda Hemphill, MD

Baylor College of Medicine

Massachusetts General Hospital

Joshua W. Knowles, MD, PhD

Lisa Hudgins, MD

Stanford University Family Heart Foundation

Weill Cornell Medical College Pediatric

Amy Peterson, MD

University of Wisconsin School of Medicine and Public Health

Michael Shapiro, DO

Wake Forest School of Medicine Family Heart Foundation

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Mary P. McGowan, MD

Lipid Clinic at Dartmouth Hitchcock Family Heart Foundation

Daniel J. Rader, MD

UPENN Perelman School of Medicine Family Heart Foundation

Amy Curry Sturm, MS, LGC 23 and Me

Lp(a) Scientific Advisory Board

Eric Brandt, MD

University of Michigan Institute for Healthcare Policy & Innovation

Abha Khandelwal, MD Stanford University

Gissette Reyes-Soffer, MD Columbia University Irving Medical Center

Seth Baum, MD

Preventive Cardiology, Inc Flourish Research

Mary P. McGowan, MD

Lipid Clinic at Dartmouth Hitchcock Family Heart Foundation

Anne Tybjærg-Hansen, MD University of Copenhagen, Copenhagen, Denmark

Henry Ginsberg, MD

Columbia University Irving Medical Center

Patrick Moriarty, MD

Kansas University Medical Center

Calvin Yeang, MD

UC San Diego Health

2023 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 problem-solving and addressing the most urgent needs of individuals and families at high genetic risk for early cardiovascular disease.

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 follows adults and children with FH and HoFH at 40 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 at 48), more than half of adults are still not achieving LDL-C goals, and rates of cardiac events remain far too high. Our most recently published paper on 67 subjects with HoFH, appeared in the Journal of the American Heart Association in April 2023. Substantial improvement in LDL-C from pre-treatment values to last follow up values was identified. 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, achieving LDL is possible.

Family Heart Database™

In order to accelerate the understanding and diagnosis of FH and elevated Lp(a) in the U.S., the Family Heart Foundation has developed and maintains the Family Heart Database which includes diagnosis, procedure, prescription and lab data on over 324 million individuals. Insights from this data enable us to better understand current care and to advocate with policy makers to ensure individuals with FH and elevated Lp(a) obtain optimal care. In 2019, the

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Family Heart Foundation published a landmark paper, “Effect of Access to Prescribed PCSK9 Inhibitors on Cardiovascular Outcomes.” This paper showed that individuals whose prescribed PCSK9 inhibitor treatment was rejected by their insurance plan or was not filled had a higher rate of cardiovascular events within 12 months compared to those who were treated with PCSK9 inhibitors. More recently, we have published data about low rates of Lp(a) screening and low numbers of people receiving LDL-C lowering drugs and lowering LDL-C to target levels, all in an effort to ultimately improve patient care.

Flag Identify Network Deliver™ FIND Initiative

To address the low rate of diagnosis, in 2014 the Family Heart Foundation developed a machine learning model we call FIND FH®. FIND FH can recognize and flag individuals who look like they have FH by analyzing data in electronic health records. We are now partnering with multiple health systems to run FIND FH and diagnose new individuals with FH. We will soon launch a similr intiative for elevated Lp(a).

Incorporating the Patient Perspective

Core to our research philosophy is incorporating the patient voice. We are collaborating with health systems on multiple grants that leverage the latest in implementation science and behavioral economics using focus groups, interviews, and other techniques to ensure that the patient perspective is incorporated in research from the beginning and throughout. Some of these grants couple the FIND machine learning model with other new tools and approaches to improve diagnosis and treatment, while others focus on facilitating cascade family screening. This research is made possible by the generous support of our donors, corporate partners, and federal grants.

Research Publications

2023

2021 (continued) 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.

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.

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. Genetic Testing for Familial Hypercholesterolemia in Clinical Practice Current Atherosclerosis Reports 2023 | Tricou, E, 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 Children with Heterozygous Familial Hypercholesterolemia in the United States: Data from the Cascade Screening for Awareness and Detection-FH Registry The Journal of Pediatrics 2020 | de Ferranti, S, et al.

Optimizing communication strategies and designing a comprehensive program to facilitate cascade testing for familial hypercholesterolemia Current Atherosclerosis Reports 2023 | CampbellSalome, G, et al.

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

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

2019 Precision screening for familial hypercholesterolaemia: a machine learning study applied to electronic health encounter data The Lancet Digital Health 2019 | Myers KD, et al. Effects of access to prescribed PCSK9 inhibitors on cardiovascular outcomes Circulation: Cardiovascular Quality and Outcomes 2019 | Myers KD, Niloofar, F, et al. Longitudinal low density lipoprotein cholesterol goal achievement and cardiovascular outcomes among adult patients with familial hypercholesterolemia: The CASCADE FH registry Atherosclerosis 2019 | Duell PB, et al. Finding missed cases of familial hypercholesterolemia in health systems using machine learning npj Digital Medicine 2019 | Banda JM, et al.

2023 FAMILY HEART GLOBAL SUMMIT |

Research Publications

2018

2016 Clinical Genetic Testing for Familial Hypercholesterolemia Journal of the American College of Cardiology 2018 | Sturm AS, et al.

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

Delivery Of Cascade Screening For Hereditary Conditions: A Scoping Review of the Literature Health Affairs 2018 | Roberts 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, EM, et al.

Familial hypercholesterolemia patient support groups and advocacy: A multinational perspective Atherosclerosis 2018 | Payne J, et al.

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

ClinVar database of global familial hypercholesterolemia-associated DNA variants Human Mutation 2018 | Iacocca MA, et al. Familial hypercholesterolaemia patient–determined themes for community-engaged research Health Education Journal 2018 | DeAngelis, EJ, et al. Is diet management helpful in familial hypercholesterolemia? Current Opinion in Clinial Nutrition and Metabolic Care 2018 | Gidding, S

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

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

2017

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 JW, et al.

The Role of Registries and Genetic Databases in Familial Hypercholesterolemia Current Opinion: Lipidology 2017 | Kindt I, et al.

The Rationale and Design of the CASCADE FH Registry: Expert Analysis Journal of American College of Cardiology 2015 | O’Brien EC, et al.

Access to Non-Statin Lipid Lowering Therapies in Patients at High Risk of Atherosclerotic Cardiovascular Disease Circulation: Cardiovascular Genetics 2017 | Knowles JW, et al. Cascade Screening for Familial Hypercholesterolemia and the Use of Genetic Testing Journal of American Medical Association 2017 Knowles JW, et al. Health disparities among adult patients with a phenotypic diagnosis of familial hypercholesterolemia in the CASCADE-FH patient registry Atherosclerosis 2017 | Amrock SM, et al.

The Agenda for Familial Hypercholesterolemia A Scientific Statement From the America Heart Association American Heart Association 2015 | Gidding S

2014 Reducing the Burden of Disease and Death from Familial Hypercholesterolemia: A Call to Action American Heart Journal 2014 | Knowles JW, et al. Underutilization of Cascade Screening for Familial Hypercholesterolemia Journal of Clinical Lipidology 2014 | Neal WA, 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 EC, et al. Familial Hypercholesterolemia In Rare Disease Database 2014. National Organization for Rare Disorders | Knowles JW, et al.

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Research Abstracts

2023

2019

Lipoprotein(a) Screening Practices in a Large US Healthcare Dataset 2023 | Will be presented at AHA

Familial Hypercholesterolemia Patients Response to a Free Genetic Testing Offer 2019 | Presented at AHA and FH Global Summit

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

2022 Characterization of Children with Homozygous Familial Hypercholesterolemia from the CASCADE FH® Registry 2022 | Presented at AAP Using Healthcare Claims Data and Machine Learning to Identify Health Disparities for Individuals with Diagnosed and Undiagnosed Familial Hypercholesterolemia. 2022 | Presented at AHA and WCIRDC Diagnosis of Familial Hypercholesterolemia: A Work in Progress 2022 | Presented at ASCP 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 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) Yield of a Familial Hypercholesterolemia Genetic Diagnosis After Electronic Health Record and Genomic Data Screening 2022 | Presented at AHA (with IMPACT FH)

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)

2017 Health Disparities among Adult Patients with Familial Hypercholesterolemia in the CASCADE FH™ Patient Registry 2017 | Presented at ACC Improved Longitudinal LDL-C Goal Achievement Among Familial Hypercholesterolemia Patients in the CASCADE FH™ Patient Registry 2017 | Presented at AHA Pediatric Familial Hypercholesterolemia: Children and Adolescents Enrolled in the CAscade SCreening for Awareness and DEtection FH Registry 2017 | Presented at NLA

2015 Initial Results from the CASCADE-FH Registry: CAscade SCreening for Awareness and Detection of Familial Hypercholesterolemia 2015 | Presented at ACC Diagnosing Familial Hypercholesterolemia (FH) in the US: Results From the CASCADE FH Patient Registry 2015 | Presented at NLA

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

2023 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, M.D., 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

16 | 2023 FAMILY HEART GLOBAL SUMMIT

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 LLTs will be required to improve lipid management in this very high-risk population. Key findings show despite treatment with available therapies, 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.

Family living with FH

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committed to ending 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.

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THANK YOU

Family Heart Advocates for Awareness for all you do!

Family Heart Community in Action The Family Heart Foundation is a true

•

Where can I find a Specialist near me?

partnership of individuals and families impacted

•

What are my treatment options?

by Familial Hypecholesterolemia (FH) and

•

Is cholesterol really bad for me?

elevated Lipoprotein(a), also called Lp(a), and

•

Isn’t it the statins that will kill me?

the healthcare professionals who diagnose and

•

What do experts say about what my LDL-C or Lp(a)

treat them. Together, we are raising awareness of FH and elevated Lp(a), driving improved

level should be? •

diagnosis, making sure individuals know their treatment options and opportunities for clinical

Is Lipoprotein Apheresis available near me for my toddler who we just discovered has Homozygous FH?

•

My insurance plan just denied my PCSK9 inhibitor

trial research, and mobilizing to impact public

prescription, can you help me make my case to my

policy. The Family Heart Foundation’s approach

insurance plan and my employer for this treatment?

to everything we do includes bringing together

•

data, medical expertise, and the patient perspective to make meaningful change in the

My family members don’t want to face this diagnosis. What can I do?

•

The doctor says it’s time to put my child on a statin,

lives of people with inherited lipid disorders.

please help me feel good about this important step

The reach and impact of the Family Heart

in our family’s journey.

Foundation’s Community in Action program can

The Family Heart Foundation is there for these

be felt all year long. Every day, the Family Heart

individuals every day, connecting them with experts,

Foundation answers questions from individuals

educational materials, research opportunities, and

with FH and elevated Lp(a) and their family

most importantly, with each other for support. We

members.

know that people who are connected with the Family

People call, email, and post on social media

Heart Foundation understand their condition better

asking: 20 | 2023 FAMILY HEART GLOBAL SUMMIT

and are more aware of their treatment options. Our

goal is that more informed and empowered individuals will achieve better outcomes for themselves, their families, and for the Family Heart Community as a whole. Over the past 11 years, the Family Heart Community in Action Program has built an incredible network of trained volunteers — Family Heart Advocates for Awareness — across the United States. These amazing individuals have stepped up to share their stories to raise awareness, to support their peers who are newly diagnosed, and to make sure the Family Heart Foundation continues to prioritize what is most important to the people we serve — individuals with FH and elevated Lp(a) and their families. We are a “patient-driven” organization. Founded and led by people with FH and elevated Lp(a), everything we do is driven by our understanding of the needs and priorities of these individuals. Family Heart Advocates inform that understanding. Their experiences have helped to illustrate the impact FH and high Lp(a) has on people’s lives, demonstrated the need for additional treatment options, and highlighted the frustration of not being able to access new treatments specifically developed and approved for people like them. Thank you for being an important member of the Family Heart Community! Help us build the FH & Lp(a) Community Connect to the Family Heart Foundation and the resources we offer. Invite the Family Heart Foundation to present with you at your workplace or in your local community. Help raise awareness on social media. Nominate someone else to be a Family Heart Advocate for Awareness! 2023 FAMILY HEART GLOBAL SUMMIT |

FH Awareness Day | September 24

Raising Awareness

of Familial Hypercholesterolemia and Lipoprotein(a)

22 | 2023 FAMILY HEART GLOBAL SUMMIT

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.

#KnowFH | #KnowLpa

Everyone deserves to know what is at the heart of their heart disease. 2023 FAMILY HEART GLOBAL SUMMIT |

REGISTRY

CASCADE

Established in 2013

CASCADE FH Registry ®

CAscade SCreening for Awareness and DEtection of Familial Hypercholesterolemiaa

24 | 2023 FAMILY HEART GLOBAL SUMMIT

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.

Principal Investigators Darius Adams, MD Zahid Ahmad, MD Rolf L. Andersen, MD Christie M. Ballantyne, MD Seth J. Baum, MD Irwin Benuck, MD, PhD Robert Block, MD, MPH Julie M. Clary, MD, MBA Sarah Clauss, MD Marc-Andre Cornier, MD Marina Cuchel, MD, PhD Stephen R. Daniels, MD, PhD Sarah de Ferranti, MD, MPH P. Barton Duell, MD Danny Eapen, MD Robert H. Eckel, MD Antonio B. Fernandez, MD Robert D. Fishberg, MD Edward Goldenberg, MD John R. Guyton, MD Ashraf S. Harahsheh, MD Linda C. Hemphill, MD Kerrilynn Hennessey, MD Lisa C. Hudgins, MD Joseluis L. Ibarra, MD Laney Jones, PharmD John Kane, MD Dean G. Karalis, MD Tina M. Kaufman, PhD, PA-C Amit Khera, MD Thomas G. Knickelbine, MD Joshua W. Knowles, MD, PhD Iftikhar J. Kullo, MD John A. Larry, MD

Glenmore Lasam, MD MacRae F. Linton, MD Gina G. Lundberg, MD Mary J. Malloy, MD Seth S. Martin, MD, MHS Jan McAlister, DNP Dervilla McCann, MD, MPH Mary P. McGowan, MD Stephen Meng, MD Michael D. Miedema, MD, MPH Michele L. Mietus-Snyder, MD Joanna Mitri, MD, MS Patrick M. Moriarty, MD Pamela B. Morris, MD Marjan Mujib, MD Sandra Oberembt, PA Arnold I. Pallay, MD Amy L. Peterson, MD Jonathan Q. Purnell, MD Lee A. Pyles, MD Arshed Quyyumi, MD Michael D. Shapiro, DO Paul Thompson, MD Aaron Turkish, MD James A. Underberg, MD Karol E. Watson, MD, PhD Christopher D. Wenger, DO Donald Wilson, MD Peter Wilson, MD Dawn R. Witt, PhD, MPH Elizabeth Yeung, MD Frances Zappalla, DO David Zidar, MD, PhD

The Family Heart Foundation gratefully acknowledges Regeneron for their financial support of the CASCADE FH Registry.

2023 FAMILY HEART GLOBAL SUMMIT |

“Runs in the family” is not a diagnosis. If heart disease or stroke run in your family, a genetic cholesterol disorder may be the cause.

Real family living with FH and high Lp(a)

Family Heart Foundation

In the News In 2022, the Family Heart Foundation launched a consumer campaign, “Runs in the Family is Not a Diagnosis,” which encouraged those with a family history of heart disease to find out if they are at risk for common yet under-diagnosed genetic cholesterol disorders that cause early onset heart disease: FH and/or elevated Lp(a). The concept zeroed in on a key insight: people with a family history of heart disease who may be struggling with high cholesterol or early signs of cardiovascular disease are often told by doctors that it “runs in the family,” but aren’t given the name of the genetic cause that leads to heart disease. The national campaign leveraged various communications channels, including the news media, to drive audiences to the campaign website: MoreFamiliesMoreHearts.org. The media relations efforts included: •

•

Consumer, health, and wellness online and print outlets highlighting genetic conditions that increase the risk of early heart disease among Black /African Americans. A syndicated content focused on genetic

26 | 2023 FAMILY HEART GLOBAL SUMMIT

causes of heart disease and strokes and featured a Black/African American advocate and medical expert. •

Satellite Media Tours (SMTs), timed to Lp(a) Awareness Day in March, and another timed to September Cholesterol Education Month, featuring a physician key opinion leader and Katherine Wilemon who spoke to her own journey to a diagnosis.

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

686 million media impression

•

132 placed news stories, including GQ, Everyday Health and Health Day

•

1,567 airings of the SMTs

•

1,018 online and print placements of the mat release

2023 FAMILY HEART GLOBAL SUMMIT |

As part of the Runs in the Family campaign, we engaged with TikTok influencer Charlotte Muller (@Breathe_Strength; 56K followers), who has FH and lost her mom to heart disease. She distributed the video across Facebook, Instagram, YouTube and TikTok, and we shared on our four social media platforms. We also implemented a video series with 11 of the Family Heart Foundation’s patient advocates who posted short videos about their family history with heart disease and path to an accurate diagnosis. One of them was Liz Thomson (@IHeartVeggies; 100K followers), an Instagram influencer with FH. The patient advocates posted the videos on their social media profiles tagging the Foundation, which we then shared on our social media pages. We saw the following results:

28 | 2023 FAMILY HEART GLOBAL SUMMIT

•

Increased engagement by 107% through influencers and paid amplification; total engagement between March 2022 and April 2023 was nearly 621K on all of our channels.

•

Reach from the influencers/advocate ads alone was more than 2M.

•

The advocate videos were top-performing organic posts across the Foundation’s channels, three of which became the top-performing videos of all time on the Foundation’s YouTube channel.

•

Advocate videos on Instagram had a 66-96% higher reach than other Foundation posts, one of the influencer’s TikTok videos alone generated more than 378K impressions.

2023 FAMILY HEART GLOBAL SUMMIT |

30 | 2023 FAMILY HEART GLOBAL SUMMIT

2023 FAMILY HEART GLOBAL SUMMIT |

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-C in 38M high-risk Americans and 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 <30% of high-risk individuals have their LDL-C controlled, and even if a person achieved their LDL target, they remained below their target for a limited duration of time (< 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.

ysis showed that there was a 49% increase in total cardiovascular events for those people who spend the majority of their time in the LDL-C “Danger Zone” versus the “Safe Zone”. In conjunction with this poster presentation, the Family Heart Foundation also held a well-attended educational session during AMCP. Another educational session was held at the America’s Health Insurance Plan (AHIP) annual meeting in June and additional sessions are planned for AMCP Fall in October as well as a dedicated LDL-C webinar in partnership with AHIP on December 15.

Are you in danger?

Don’t get hit with a heart attack Take action to get your LDL cholesterol to the Safe Zone and save yourself from a heart attack or stroke.

Learn more about your Safe Zone:

LDLSafeZone.org

The GOAL program was launched to engage all stakeholders (patients, payers, practitioners, and policy makers) with a comprehensive educational campaign to improve awareness, treatment, and control of LDL-C in high-risk Americans. Patients: A new patient-oriented video was released on February 14 and a companion website with many new tools and resources for patients was launched in early June. Additionally, a new patient tear pad on the importance of getting to the LDL Safe Zone was made available in December 2022 and has been promoted at major medical meetings throughout 2023 as well as online. Payers: The Family Heart Foundation presented a poster from the PPPLLL analysis at the Academy of Managed Care Pharmacy (AMCP) Spring meeting in San Antonio, TX. This anal32 | 2023 FAMILY HEART GLOBAL SUMMIT

Practitioners: The Family Heart Foundation has undertaken a number of initiatives to raise awareness among 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-focused patient resources. This booth debuted at the American Society for Preventive Cardiology meeting in June, and we will be exhibiting at 5 more meetings in 2023.

For Cholesterol Awareness Month in September, we partnered with HCP Live on a program entitled, “New Guidance, New Data, and New Targets for the Management of Hyperlipidemia”. This program was chaired by Dr. Keith Ferdinand and featured Dr. Payal Kohli, Dr. Erin Michos, Dr. Christie Ballantyne, and Family Heart Chief Medical Officer Dr. Mary McGowan. A total of 14 episodes will be released and these programs typically reach over 10,000 HCPs.

Additionally, we have partnered with Pri-Med on a series of educational sessions entitled, “Opportunities to Reduce the Rising Tide of Heart Attacks and Strokes through better LDL-C Management”. Two virtual programs have already been completed along with an in-person program in Tampa, with one more slated for October 24 in Atlanta. A few highlights of the first 3 programs: •

>800 HCPs have attended

•

The Pri-Med Tampa was standing room only with people being turned away at the door

•

> 2/3 of attendees do not see pharmaceutical representatives.

•

>70% increase in familiarity with the topic of LDL-C management

•

>85% will incorporate the information into clinical practice

Policy Makers: The Family Heart Foundation has created a white paper which contains numerous policy recommendations to improve the awareness, treatment, and control of LDL-C. This will be distributed at key meetings in 2023 and 2024. Additionally, a Congressional Briefing on the importance of LDL-C and the need to re-establish LDL quality measures will be taking place on Tuesday, October 3 in Washington, DC. Key advocacy priorities for the Foundation include restoration of LDL-C quality measures, PBM transparency, and prior authorization reform. Overall, much progress has been made in 2023 through the GOAL program and we look forward to continuing and expanding upon these activities in 2024. The Family Heart Foundation gratefully acknowledges Amgen for their support of GOAL as a Foundation-Level sponsor.

2023 FAMILY HEART GLOBAL SUMMIT |

2023 Family Heart Campaign

Journey to the LDL Safe Zone Heart disease is still the leading cause of death for adults in the United States, but there are ways to know your risk and take action. One of the most effective ways for you to lower your risk is lowering your low-density lipoprotein cholesterol (LDL). Seven out of 10 people at high-risk for cardiovascular disease have LDL above recommended levels. We have decades of research showing high LDL cholesterol (the “bad” cholesterol) is a major risk factor for cardiovascular disease. There are medical guidelines that clearly outline recommended LDL levels and when and how to get there. Research shows that living with lower LDL for longer is one of the best things you can do to reduce your risk for heart disease and stroke. At the Family Heart Foundation, we call that getting to the Safe Zone.

Do more than “Know Your Numbers.” Don’t stop until you reach the LDL Safe Zone. STEP 1

Understand the role of cholesterol

STEP 2

STEP 3

STEP 4

Understand your cholesterol levels

Understand if your LDL cholesterol level is genetic

Make necessary changes to reach you LDL cholesterol goal

LDLSafeZone.org 34 | 2023 FAMILY HEART GLOBAL SUMMIT

“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. Advocate for Awareness

“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. Advocate for Awareness

2023 FAMILY HEART GLOBAL SUMMIT |

“The Family Heart Foundation provides me with a wealth of support and resources. The Family Heart Community allows me to hear stories and share mine. I know that through awareness and education, we will make a difference globally.” — Ray S. Advocate for Awareness

“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. Advocate for Awareness 36 | 2023 FAMILY HEART GLOBAL SUMMIT

2023 FAMILY HEART GLOBAL SUMMIT |

Join us in our goal to save 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 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 managing their LDL cholesterol and other cardiovascular risk factors.

The Flag, Identify, Network, Deliver™ initiative is an innovative program designed to close the gaps in care for individuals living with familial hypercholesterolemia (FH) and/or elevated lipoprotein(a), also known as Lp(a). This comprehensive program uses the real-world application of artificial intelligence, implementation science, and quality improvement science to help healthcare systems screen their populations for individuals at high risk for having FH and/or elevated Lp(a). Once identified and diagnosed, individuals and their health care teams are offered a network of supportive resources from the Family Heart Foundation. 38 | 2023 FAMILY HEART GLOBAL SUMMIT

Find individuals with FH or elevated Lp(a) The Machine Learning Model The Family Heart Foundation created the FIND FH® Machine Learning Model. This algorithm analyzes Electronic Health Record (EHR) data in a HIPAA compliant way to identify individuals at high risk for having familial hypercholesterolemia (FH). The FIND FH model was developed using over 350 variables, including diagnosis codes, procedure codes, prescription codes, lab values, gender, and age. The model was trained using data from over 221 million Americans (children and

adults) with or at risk for cardiovascular disease in the Family Heart Database.

CURRENTLY UNDERWAY

Building on the success of the FIND FH model, the FIND Lp(a) model will be created and trained using an updated Family Heart Database

•

Model output allows providers to focus on undiagnosed individuals who need further evaluation to determine if they have FH.

•

Clinical follow up: More than 800 individual charts have been reviewed to date New Diagnosis: 230 patients have been newly diagnosed with FH through with the FIND FH program

FIND FH Partners

FIND FH Today ACCOMPLISHMENTS TO DATE • •

•

Five (5) Health Systems are highly engaged in the FIND FH CLN Flag: More than 2,500 individuals across the five (5) partnering health systems were identified or “flagged” as probable FH using the machine learning model and returned thus far to the health systems for detailed administrative review. Approximately 80% of the flagged individuals were found to be eligible for clinical follow up.

Individuals living with FH Additional partners are being recruited Looking for more information about joining our network of FIND programs? Contact Allison Hawke ah@familyheart.org

2023 FAMILY HEART GLOBAL SUMMIT |

LEARN MORE ABOUT EVKEEZA AT EVKEEZAHCP.COM

2023 FAMILY HEART GLOBAL SUMMIT |

“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 Advocate for Awareness

Provides Hope When Drug Therapy Fails™ LIPOSORBER is indicated for use in clinically diagnosed Familial Hypercholesterolemia (FH) patients with either documented CAD or PAD, if: • LDL-C ≥100 mg/dl -or-

• Lp(a) ≥60mg/dl and diet and maximum tolerable combination lipid lowering drug therapies have failed to achieve the established therapeutic targets per professional guidelines.1

Studies have shown that lowering cholesterol with LIPOSORBER therapy significantly reduces the risk of coronary events in FH patients.2

1. Kaneka Medical America LLC., 2021, LIPOSORBER®LA-15 SYSTEM Operator’s Manual No.1002en-R4. 2. Mabuchi, H et al. “Long-term efficacy of low-density lipoprotein apheresis on coronary heart disease in familial hypercholesterolemia.” Hokuriku-FH-LDL Apheresis Study Group. The American journal of cardiology vol. 82,12 (1998): 1489-9 doi:10.1016/s0002-9149(98)00692-4

42 | 2023 FAMILY HEART GLOBAL SUMMIT

Learn more: liposorber.com

Familial Hypercholesterolemia

Global Impact In 1998, the World Health Organization

individuals, advocacy leaders, international

(WHO) and several members of

associations, scientific experts, policymakers

the international FH Community

and the original authors of the 1998 report

published the WHO Report on Familial

to collaborate together to reexamine the

Hypercholesterolemia (FH). This prescient

recommendations and update them to meet

document included 11 recommendations to

the needs of today’s FH population.

address the large gaps in diagnosis and care

Two meetings were hosted by the Family

of individuals with FH around the world. In the more than 20 years since its publication, only a few of these recommendations have been widely implemented on a country-bycountry basis and an entire generation of impacted individuals with FH has been lost to premature heart disease.

Heart Foundation and WHF in Marina del Ray, California on October 3 and in Dubai, United Arab Emirates on December 6, 2018. This created a coalition of 40 countries and 90 stakeholders who provided their perspectives of FH from low-, middle-, and high-income regions. A set of eight global

During the 2018 FH Global Summit, the

public policy recommendations covering

Family Heart Foundation (formerly known

awareness, advocacy, screening, diagnosis,

as the FH Foundation) initiated a Global

treatment, research, registries, and cost/value

Call to Action to update the original

were created.

recommendations and create an advocacy

The Global Call to Action was published

tool to drive FH awareness around the world and to implement the updated recommendations. We partnered with World Heart Federation (WHF) to convene the international FH Community of impacted

44 | 2023 FAMILY HEART GLOBAL SUMMIT

in JAMA Cardiology in January 2020. The Family Heart Foundation is using this report to advocate with government and health policy leaders to prioritize FH as a public health concern.

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. 2023 FAMILY HEART GLOBAL SUMMIT |

Celebrating the life of

Dr. Avedis K. Khachadurian The Family Heart Community and I were deeply saddened by the passing of Dr. Avedis K. Khachadurian. In 2015, we awarded Dr. Khachadurian our FH Foundation Pioneer Award in recognition for his tremendous impact on the field of familial hypercholesterolemia (FH). For over 60 years, Dr. Khachadurian made significant and historic contributions to our understanding of the range of phenotypes in FH. He elegantly differentiated heterozygous and homozygous forms of FH in a region of the world (Lebanon) with very high rates of FH. His determination as a scientist and passion as a physician impacted families across the world. He gave his

46 | 2023 FAMILY HEART GLOBAL SUMMIT

skills and his time to help others and was a champion of the FH community. He will be missed.

— Dr. Daniel J. Rader Chairman of the Board and Chief Scientific Advisor Family Heart Foundation

Dr. Danial Rader (left), Dr. Avedis Khachadurian (center), and Mashal Anjum (right) at the 2015 FH Global Summit. Mashal was an HoFH patient of Dr. Khachadurian as a child. He was instrumental in her diagnosis and future HoFH care.

Editorial from the Journal of Lipidology

In memoriam, Avedis Khachadurian 1926 - Sept 22, 2022

It is with great respect, fondness, and admiration

possible to glean the classic pattern. It is his

that I remember Avedis Khachadurian (see Fig.

observation that suggested heterozygous and

1). I only had episodic interaction with Professor

homozygous states among individuals in this

Khachadurian, but he left a strong impression

family without access to molecular diagnosis.

and I wanted to share my thoughts with the

Of course, in the era of easy access to genetic

lipidology community.

testing, we have discovered additional diagnoses

He is best known in the field of lipidology as

and genetic patterns that challenge clinicians

being the first to report a large kindred with

today.

hypercholesterolemia, demonstrating classic

In addition to helping to establish the

Mendelian inheritance pattern of a dominant

nomenclature for this condition, Dr.

trait. His-published clinical description

Khachadurian took the time and care to chronicle

helped define the role of the Clinical Lipid

his patients’ extraordinary physical findings with

Specialist and how we conceptualized familial

photography (see Fig. 3). I had the privilege of

hypercholesterolemia (FH) for years to come.

inviting him to Philadelphia about 15 years ago

In his seminal 1964 paper entitled

to present at our local Philadelphia Lipid and

‘The Inheritance of Essential Familial Hypercholesterolemia’ he reported the inheritance patterns seen in 10 different families. In one of the families, he focused on the clinical characteristics of a 14-year-old girl

Atherosclerosis Club (PLAC). We were a relatively small group that evening, and he did not have the benefit of a microphone in the room. Histhen 80- year-old voice struggled to be heard over the whir of the carousel slide projector, but

who presented with xanthomas and severe hypercholesterolemia comparing her with her siblings and parents (see Fig. 2). Both she and her older brother had marked hypercholesterolemia, xanthomas and xanthelasmas, while 3 of her siblings and both of her parents had less profound hypercholesterolemia and 3 other siblings had normal cholesterol levels. The 3-tiered levels conform to a classic Mendelian inheritance pattern in this condition and his astute observation defined the condition for subsequent generations of clinicians and researchers in lipidology. I present the following family tree regularly when teaching about FH to honor Dr. Khachadurian’s work and because I do not have personal interactions with large families where it is

Figure 1 Image of Avedis Khachadurian, first published in Rutgers-Robert Wood Johnson Medicine – Spring 2016 page 28; with permission. Photo credit John Emerson.1

Figure 2 Family tree, adapted from The Inheritance of Essential Familial Hypercholesterolemia, 1964.2 Squares denote males, circles denote females. # inside shape is total cholesterol (mg/dL), # below shape is age of family member. Red square upper left quadrant denotes homozygous phenotype; yellow square bottom left quadrant denotes heterozygous phenotype.

it had the effect of making us all “lean in” and

He presented the following photograph (Figure

hear from the legend in our field. He shared

3), among others of his patients, and allowed

stories of his family’s migration from Armenia

me to digitalize, archive permanently, and

to Aleppo, Syria following genocide in his home

memorialize in lectures (such as the NLA’s

country before he was born, then training and

Foundations of Clinical Lipidology) and written

practicing as an endocrinologist at the American

work.

University in Beirut, Lebanon, before coming

The best part of his generosity in allowing me to

to the US to finish his career in endocrinology at the Robert Wood Johnson Medical College in New Jersey (and Northwestern University as well). His-early clinical practice drew from a wide catchment, and he had the opportunity to see the natural history of disease in ways we will likely never see again thanks to earlier initiation diagnosis and more effective therapeutics. He recounted how his patients would come to clinic with large empty coffee tins to fill up with powdered cholestyramine, the only available pharmacotherapy at the time.

digitalize the photos is that I had to return the slide carousel to him at his Princeton NJ home. This meant that I had another opportunity to sit and chat with this dear man and his lovely wife who served us tea and biscuits. He talked about contentious discussions with Donald Fredrickson and others and expressed strong opinions about lipid and lipoprotein physiology. He reminded me that the foundations of lipidology started out as basic concepts that were tested and challenged and that great science rarely follows a straight line of progress. I honor and remember a man dedicated to his craft, his family, his tradition who was a true gentleman and scholar. Daniel Soffer, MD President National Lipid Association Assistant Professor of Medicine Perelman School of Medicine University of Pennsylvania

Journal of Clinical Lipidology (2023) 17, 310–312 Figure 3 Image of physical findings shared by Avedis Khachadurian to Daniel Soffer ca 2015. This and other images digitalized from originals and shared freely on National Lipid Association website, and for distribution for educational purposes. Available at https://www.lipid.org/node/1475. 48 | 2023 FAMILY HEART GLOBAL SUMMIT

References 1. https://rwjms.rutgers.edu/news_publications/publications/ RURWJMedSp16_Fin_Animated/html/28.html, accessed 31 Jan, 2023. 2. Khachadurian AK. The inheritance of essential familial hypercholesterolemia. Am J Med. 1964;37:402–407 PMID14209286. doi:10.1016/ 0002- 9343(64)90196- 2.

“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. Advocate for Awareness Family Heart Foundation, Board Member

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2023 FAMILY HEART GLOBAL SUMMIT |

2018 FH Global Summit, Marina del Rey, CA

Anne Tybjærg-Hansen, MD, DMSc

Børge G. Noordestgaard, MD, DMSc

Family Heart Foundation 2023

Pioneer Award The Family Heart Foundation is proud to

between lipoproteins and atherosclerotic

recognize the contributions over several

cardiovascular disease (ASCVD), with impli-

decades by Professors Anne Tybjærg-

cations for diagnosis, prognosis, and therapy

Hansen and Børge Nordestgaard from

for dyslipidemia. They were among the

Copenhagen, Denmark with the 2023 Family

first to demonstrate a causal role of ApoB-

Heart Foundation Pioneer Award. They have

containing lipoproteins in the initiation and

made multiple groundbreaking contributions

progression of atherogenesis and have com-

to our understanding of the relationship

pellingly demonstrated that triglyceride-rich

50 | 2023 FAMILY HEART GLOBAL SUMMIT FH Global Summit 2019

lipoproteins are causal factors in ASCVD. They employed genetic approaches to prove the causal role of lipoprotein(a) in not only coronary artery disease but also aortic stenosis. Through very large population-based studies in the Copenhagen region they have been leaders in identifying novel genetic and non-genetic biomarkers for cardiovascular disease. Professors Tybjærg-Hansen and Nordestgaard have each had major leader-

Dr. Anne Tybjærg-Hansen and Dr. Børge G. Noordestgaard speaking at the 2018 Family Heart Global Summit in Marina del Rey, CA.

ship roles in major societies focused on lipids and cardiovascular disease, and have collectively published over 900 research articles and mentored over 100 trainees that continue to further advancements in the field. Perhaps most importantly, they have shown a tireless commitment to improving the lives of patients with FH, high Lp(a), and with or at risk for ASCVD not only through research

Dr. Anne Tybjærg-Hansen and Dr. Børge G. Noordestgaard with their children

but also through advocacy. The Family Heart Foundation is thrilled to honor Professors Tybjærg-Hansen and Nordestgaard by jointly awarding them the 2023 Family Heart Foundation Pioneer Award.

“Not only were we soulmates, but the two of us became also the closest scientific partners.” — Børge G. Noordestgaard, MD, DMSc

Photo credit: University of Copenhagen

Dr. Børge G. Noordestgaard at the University of Copenhagen

Dr. Anne Tybjærg-Hansen with research group

2023 FAMILY HEART GLOBAL SUMMIT |

“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. Advocate for Awareness

“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 Advocate for Awareness. 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. Advocate for Awareness

52 | 2023 FAMILY HEART GLOBAL SUMMIT

Together, Together, we’re uncovering we’re uncovering Together, Together, the risk the risk of of we’re uncovering we’re uncovering elevated the ofof elevated Lp(a). therisk riskLp(a). elevated elevatedLp(a). Lp(a). Because Because a a simple simple Because a simple blood test for elevated blood test for elevated Because a simple blood test for elevated Lp(a) can help inform Lp(a) can help inform blood test for elevated Lp(a) acan help inform lifetime of lifetime of Lp(a)aacan help lifetime ofinform cardiovascular cardiovascular a lifetime of cardiovascular care. care. cardiovascular care. care. 1,2

1,2 1,2 1,2

References: 1. Farzam K, Senthilkumaran S. Lipoprotein A. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022. Updated References: 1. Farzam K, Senthilkumaran S. Lipoprotein A. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022. Updated September 2, 2022. Accessed August 25, 2023. https://www.statpearls.com/ArticleLibrary/viewarticle/130795 2. Kronenberg F, Mora S, Updated References: 1.2022. Farzam K, Senthilkumaran S. Lipoprotein A. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022. September 2, Accessed August 25, 2023. https://www.statpearls.com/ArticleLibrary/viewarticle/130795 2. Kronenberg F, Mora S, Stroes ESG, et al. Lipoprotein(a) in atherosclerotic cardiovascular disease and aortic stenosis: A European Atherosclerosis Society consensus September 2, 2022. Accessed August 25, 2023. https://www.statpearls.com/ArticleLibrary/viewarticle/130795 2. Kronenberg F, Mora S, Stroes ESG, et al. Eur Lipoprotein(a) in atherosclerotic cardiovascular disease and aortic stenosis: A European Atherosclerosis Society consensus statement. Heart J. 2022;43(39):3925-3946. Stroes ESG,Eur et al. Lipoprotein(a) in atherosclerotic cardiovascular disease and aortic stenosis: A European Atherosclerosis Society consensus statement. Heart J. 2022;43(39):3925-3946. statement. Eur Heart J. 2022;43(39):3925-3946. References: 1. Farzam K, Senthilkumaran S. Lipoprotein A. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022. Updated September 2, 2022. Accessed August 25, 2023. https://www.statpearls.com/ArticleLibrary/viewarticle/130795 2. Kronenberg F, Mora S, Stroes ESG, et al. Lipoprotein(a) in atherosclerotic cardiovascular disease and aortic stenosis: A European Atherosclerosis Society consensus statement. Eur Heart J.Pharmaceuticals 2022;43(39):3925-3946. Novartis Corporation

EastPharmaceuticals Hanover, New Jersey 07936-1080 Novartis Corporation Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080 East Hanover, New Jersey 07936-1080

2023 FAMILY SUMMIT | 8/23 HEART GLOBAL302324-1

8/23 8/23

302324-1 302324-1

“One of the biggest challenges in healthcare at the moment is this debate about value and it’s different interpretations, each requiring something new.”

Keynote Speaker

Ron Adner, PhD Leverone Memorial Professor of Business Administration Professor of Strategy and Entrepreneurship Tuck School of Business at Dartmouth College Author of “The Wide Lens: A New Strategy for Innovation”

Dr. Ron Adner is The Leverone Memorial Professor of Business Administration and Professor of Strategy and Entrepreneurship at the Tuck School of Business at Dartmouth College. Prior to joining Tuck, he was the Akzo-Nobel Fellow of Strategic Management at INSEAD, where he served on the faculty for ten years. Dr. Adner’s award-winning research introduces a new perspective on value creation and competition when industry boundar-

ies break down in the wake of ecosystem disruption. His two books, The Wide Lens: What Successful Innovators See that Others Miss (2012) and Winning the Right Game: How to Disrupt, Defend, and Deliver in a Changing World (2021) have been heralded as landmark contributions to the strategy literature. Clayton Christensen (Innovator’s Dilemma) described his work as “Pathbreaking,” and Jim Collins (Good to Great) has called him “One of our most important strategic thinkers for the 21st century.”

54 | 2023 FAMILY HEART GLOBAL SUMMIT FH Global Summit 2019

“We know beyond a doubt how to prevent most cardiovascular disease. Now, we need to turn that knowledge into action for heart health.”

Keynote Speaker

George A. Mensah, MD, FACC Director The Center for Translation Research and Implementation Science (CTRIS) National Heart, Lung, and Blood Institute (NHLBI) Dr. George A. Mensah is Director of The Center for Translation Research and Implementation Science (CTRIS) at the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH). In this position, Dr. Mensah provides strategic oversight and direction for all the Center’s programs. He also oversees and manages NHLBI’s late-stage translation research and implementation science efforts as well as its diverse research portfolio. Dr. Mensah’s primary focus is on the application of implementation and systems science approaches to address research translation gaps, health inequities, and

maximize health impact in the prevention and treatment of heart, lung, and blood diseases. Dr. Mensah is a clinician-scientist trained in internal medicine and the subspecialty of cardiovascular diseases. His professional experience includes 25 years of public service between the U.S. Department of Veterans Affairs (VA), the Centers for Disease Control and Prevention (CDC), and the NIH. He has had management experience as a chief of cardiology; head of a clinical care department; and the Surgeon General’s nominee to the Board of Governors of the American College of Cardiology as governor for public health.

2023 FAMILY HEART GLOBAL SUMMIT |

We are here to help! The Family Heart Foundation has an international resource to help find a specialist near you.

FamilyHeart.org/find-specialist

56 | 2023 FAMILY HEART GLOBAL SUMMIT

“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. Advocate for Awareness

We Have Resources

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.

2023 FAMILY HEART GLOBAL SUMMIT |

Washington D.C. | October 1 & 2, 2023

Global Summit Through a Wider Lens: Lipid Management Across Populations and Lifetimes The 2023 Family Heart Global Summit convenes academia, industry, public health stakeholders, and individuals living with inherited lipid disorders to provide engagement through didactic learning, expert panel discussions, and most importantly audience participation. This year’s theme focuses on “looking through a broader lens,” with discussions on bridging gaps in the use of available data and artificial intelligence, addressing health equity, and implementing best practices to avoid disease development in populations at risk.

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

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

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

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

CO-CHAIRS

Keith C. Ferdinand, MD Tulane University School of Medicine Family Heart Foundation

Gissette Reyes-Soffer, MD Columbia University, Irving Medical Center Family Heart Foundation

HOSTS

Joshua W. Knowles, MD, PhD Stanford Univeristy Medical Center Family Heart Foundation

Katherine Wilemon Family Heart Foundation

Daniel J. Rader, MD Perelman School of Medicine, University of Pennsylvania Family Heart Foundation

2023 FAMILY HEART GLOBAL SUMMIT |

Through a Wider Lens: Lipid Management Across Populations and Lifetimes Washington, D.C.

AGENDA Sunday, October 1: Opening Ceremony (Grand Ballroom) Welcome Co-Chairs: Keith C. Ferdinand, MD, Gissette Reyes-Soffer, MD Co-Hosts: Joshua W. Knowles, MD, PhD, Daniel J. Rader, MD, and Katherine A. Wilemon

Family Heart Foundation Mission

2:00 pm 2:10 pm

Allison Jamison and Courtney Riley, MD

Connecting Science, Guidelines, Healthcare, and Communities: We Can Do Better

2:20 pm

Keith C. Ferdinand, MD

Opening Keynote Address

2:35 pm

An Ecosystem Approach to Integrating Innovation Ron Adner, PhD

Discussion with Q & A BREAK

3:15 pm

Global Efforts to Improve Cardiovascular Outcomes: FH and Lp(a)

3:35 pm

Moderator: Gissette Reyes-Soffer, MD International Representatives: Mutaz Al-Sabah, MD, Florian Kronenberg, MD, G.B. John Mancini, MD, Maxima Mendez-Castillo, MD, and Shizuya Yamashita, MD, PhD

Family Heart Pioneer Award Børge G. Nordestgaard MD, DMSc and Anne Tybjærg-Hansen, MD, DMSc

4:20 pm

Pioneer Award lecture Discussion with Q & A Day 1 Closing

4:55 pm

Opening Reception (Chinese Ballroom)

5:00 pm

60 | 2023 FAMILY HEART GLOBAL SUMMIT

Monday, October 2: Breakfast (State Room)

7:00 am

Family Heart Global Summit – Day 2 (Grand Ballroom) Welcome

8:00 am

Keith C. Ferdinand, MD and Gissette Reyes-Soffer, MD

8:05 am

Session 1 Flag, Identify, Network, Deliver™ FIND FH: Addressing Decades without Diagnosis Joshua W. Knowles, MD, PhD

The Lived Experience Daniel Scott Himmelstein, PhD

FIND FH: Overcoming Barriers to Patient Outreach through Collaborative Learning (2018 – 2023) George T. Blike, MD

FIND FH: A Collaborative Learning Network Amit Khera, MD

FIND FH: Implementation Science in Action Brian S. Mittman, PhD

FIND Lp(a): Skating to the Puck Diane MacDougall, MS

Flag, Identify, Network, Deliver: Panel Discussion with Q & A Moderator: Keith C. Ferdinand, MD Panelists: George T. Blike, MD, Daniel Scott Himmelstein, Amit Khera, MD, Diane MacDougall, MS, and Brian S. Mittman, PhD

Session 2 9:00 am What Stands in the Way of Integrating Innovations and Equity in Cardiovascular Care? The Lipid Lowering Landscape Today Daniel J. Rader, MD

Leadership Roundtable Moderators: Keith C. Ferdinand, MD and Gissette Reyes-Soffer, MD Panelists: Ron Adner, PhD, Bob Bradway, Daniel J. Rader, MD, and Katherine Wilemon

BREAK

10:00 am

2023 FAMILY HEART GLOBAL SUMMIT |

Session 3 Lipoprotein(a): New Opportunities, Old Challenges

10:20 am

The Lived Experience Bruce Gordon

Lipoprotein(a): Setting the Stage Gissette Reyes-Soffer, MD

Understanding Genetics + Emerging Treatments for Lp(a) Florian Kronenberg, MD

Measurement of Lp(a): Alignment Is Critical Alicia N. Lyle, PhD

Panel Discussion with Q & A Moderator: Gissette Reyes-Soffer, MD Panelists: Bruce Gordon, Florian Kronenberg, MD, and Alicia N. Lyle, PhD

GROUP PHOTO

11:15 am

Lunch (State Room)

11:30 am

Session 4 Bad for All, Worse for Some: Tackling Disparities in Cardiovascular Care

12:30 pm

Why U.S. Healthcare Can’t Afford Health Inequities Keith C. Ferdinand, MD

The Lived Experience Aditi Durga

Confronting Racial and Ethnic Disparities in Cardiovascular Health Care Yvonne Commodore-Mensah, PhD, MHS, RN

Leveraging Implementation Science for Cardiovascular Health Equity Nathalie Moise, MD, MS

Panel Discussion with Q & A Moderator: Keith C. Ferdinand, MD Panelists: Yvonne Commodore-Mensah, PhD, MHS, RN, Aditi Durga and Nathalie Moise, MD, MS

Session 5 Community Engagement

1:30 pm

Community Engagement Panel Discussion Moderators: Keith C. Ferdinand, MD and Gissette Reyes-Soffer, MD Panelists: Yvonne Commodore-Mensah, PhD, MHS, RN, Daphne Ferdinand, PhD, RN, Chloé D. Villavaso, MN, and Ora Williams

BREAK

62 | 2023 FAMILY HEART GLOBAL SUMMIT

1:45 pm

2:15 pm

Keynote Address NHLBI DECIPHeR Program to Address Disparities George A. Mensah, MD

Discussion with Q & A George A. Mensah, MD with Keith C. Ferdinand, MD and Gissette Reyes-Soffer, MD

Session 6 Lipids and Cardiovascular Disease Across the Lifetime

3:00 pm

The Lived Experience Sydney Phillips

Acting on Pediatric Guidelines Mary P. McGowan, MD

Inherited Dyslipidemias and Heart Disease in Women Eugenia Gianos, MD

Raging Controversies in Primary Prevention of ASCVD Roger S. Blumenthal, MD

Panel Discussion with Q & A Moderator: Gissette Reyes-Soffer, MD Panelists: Roger S. Blumenthal, MD, Eugenia Gianos, MD, Mary P. McGowan, MD, and Sydney Phillips

BREAK

4:00 pm

Session 7 Misalignment of Incentives Is Bad for Patients, Practitioners, and Public Health

4:15 pm

Restoring LDL Cholesterol Quality Measures Christie M. Ballantyne, MD

Financial Toxicity and CVD Outcomes Khurram Nasir, MD, MPH

Panel Discussion with Q & A Moderator: Keith Ferdinand, MD Panelists: Christie M. Ballantyne, MD and Khurram Nasir, MD, MPH

Closing and Call to Action Co-Chairs: Keith C. Ferdinand, MD, Gissette Reyes-Soffer, MD Co-Hosts: Joshua W. Knowles, MD, PhD, Daniel J. Rader, MD, and Katherine A. Wilemon

Closing Reception (Chinese Ballroom)

5:00 pm

5:15 pm

2023 FAMILY HEART GLOBAL SUMMIT |

Global Summit The Family Heart Foundation would like to thank our 2023 Family Heart Global Summit sponsors for their continued commitment to driving the prevention of cardiovascular disease. FOUNDATION LEVEL

PARTNER LEVEL

PREMIER LEVEL

SUPPORTING LEVEL

COMMUNITY BENEFACTORS

64 | 2023 FAMILY HEART GLOBAL SUMMIT

“Since my sister’s death, my mom, grandmother and I have joined the Family Heart Foundation as Advocates for Awareness 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 R. Advocate for Awareness

“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. Advocate for Awareness

2023 FAMILY HEART GLOBAL SUMMIT |

2023 Family Heart Global Summit

Speakers Ron Adner, PhD

Leverone Memorial Professor of Business Administration Professor of Strategy and Entrepreneurship Tuck School of Business at Dartmouth College Author of “The Wide Lens: A New Strategy for Innovation”

Ron Adner, PhD is the Leverone Memorial Professor of Business Administration and Professor of Strategy and Entrepreneurship at the Tuck School of Business at Dartmouth College. Prior to joining Tuck, he was the Akzo-Nobel Fellow of Strategic Management at INSEAD, where he served on the faculty for ten years. Dr. Adner’s award-winning research introduces a new perspective on value creation and competition when industry boundaries break down in the wake of ecosystem disruption. His two books, The Wide Lens: What Successful Innovators See that Others Miss (2012) and Winning the Right Game: How to Disrupt, Defend, and Deliver in a Changing World (2021) have been heralded as landmark contributions to the strategy literature. Clayton Christensen (Innovator’s Dilemma) described his work as “Path-breaking,” and Jim Collins (Good to Great) has called him “One of our most important strategic thinkers for the 21st century.” Dr. Adner is an elected Fellow of the Strategic Management Society. He has held board positions in the leading peer-reviewed academic journals of his field, including the Academy of Management Review, Management Science, the Strategic Management Journal, and Strategy Science. His managerial articles have been published in outlets including the Harvard Business Review, The Atlantic, Fast Company, Forbes, Wired, The Financial Times, and the Wall Street Journal. Dr. Adner’s work is a rare convergence of rigorous academic research, profound managerial insights, and practical, powerful frameworks. Applied, tested, and validated in some of the world’s leading organizations, his approach to seeing the bigger strategy picture has been transformative in driving effective innovation in both the corporate and social sectors. Dr. Adner is a keynote speaker, consultant, and advisor to companies around the world. He is the founder of the Strategy Insight Group, whose mission is to help clients eliminate strategy blind spots and build robust go-to-market strategies in complex ecosystems, internal and external. These engagements have transformed strategy at firms ranging from the Fortune 500 to entrepreneurial startups. His approach to ecosystem strategy was foundational to the U.S. governments Operation Warp Speed COVID-19 vaccine initiative. He is an accomplished teacher and a seven-time recipient of the annual, student-voted, Award for Teaching Excellence at both Tuck and INSEAD (2000, 2002, 2003, 2004, 2005, 2011, 2019). Dr. Adner holds a PhD and an MA from the Wharton School at the University of Pennsylvania, as well as master’s and bachelor’s degrees in mechanical engineering from the Cooper Union for the Advancement of Science and Art.

66 | 2023 FAMILY HEART GLOBAL SUMMIT

Speaker Bios

Mutaz Al-Sabah, MD President Iraqi Lipid Clinics Network

Mutaz Al-Sabah, MD is a preventive cardiologist with an with an interest in atherosclerotic cardiovascualr disease and familial lipid disorders, particularly familial hypercholesterolemia. He is the founder and the president of the Iraqi Lipid Clinics Network. He represents MENA and AFRICA in the FH advocacy group in World Heart Federation. He is also a member of the IAS Regional Federation. Mutaz Al-Savah is a national lead investigator of Iraw in the EAS-FHSC. He is also a member of the international lipid expert panel. All of his published research contributions have focused on familial hypercholesterolemia.

Christie M. Ballantyne, MD Professor Director of Center for Cardiometabolic Disease Prevention Chief, Cardiovascular Research Baylor College of Medicine Scientific Advisor Family Heart Foundation Christie M. Ballantyne, MD, is an internationally renowned expert on lipids, atherosclerosis, and heart disease prevention. He is the Chief of Cardiovascular Research and the Director of Cardiometabolic Disease Prevention at Baylor College of Medicine. Dr. Ballantyne’s research in the prevention of heart disease led him to become an established investigator for the American Heart Association. Since 1988, Dr. Ballantyne has received continuous funding from the National Institutes of Health to support his basic research of leukocyte-endothelial interactions, translational biomarkers and clinical trials. Clarivate Web of Science named Dr. Ballantyne as a “Highly Cited Researcher” from 2017 to 2022, being in the top 1% of the most-cited investigators. This distinction is based on his 800-plus journal publications in the areas of atherosclerosis, lipids and inflammation. His research has led to the U.S. Food and Drug Administration’s approval of two biomarkers for cardiovascular risk prediction, and he has played a prominent role in the development and approval of new lipid-lowering therapies. Dr. Ballantyne’s many professional accomplishments include being elected Fellow of the American Association for the Advancement of Science, the American Society of Clinical Investigation, and the Association of American Physicians. He serves on the Editorial Board of Circulation and the Journal of the American College of Cardiology, and in 2012 he received the Distinguished Scientist Award from the American College of Cardiology.

2023 FAMILY HEART GLOBAL SUMMIT |

Speaker Bios

George Blike, MD Chief Quality Officer Family Heart Foundation Professor of Anesthesiology and Community/Family Medicine Geisel School of Medicine

George Blike, MD is an anesthesiologist clinically and a quality, patient safety and human factors scientist. He also has senior leadership experience in a tertiary health care system. He received his residency training at Yale specializing in obstetric, cardiac and pediatric anesthesiology and received a Masters in Health Care Delivery Science from Tuck Business School at Dartmouth. He spent his 30-year career at Dartmouth clinically and academically. He has been a member of the Human Factors and Ergonomic Society since 1990 and is a Professor of Anesthesiology, Community and Family Medicine (Geisel School of Medicine) and is an Adjunct Professor in The Dartmouth Institute for Health Policy and Clinical Practice. His research has focused on designing and implementing high reliability systems, cognitive systems engineering and health care delivery science. Dr. Blike’s leadership experience spans two decades and includes being the the first Patient Safety Officer for the Dartmouth-Hitchcock Medical Center and then serving as the inaugural Chief Quality and Value Officer of the Dartmouth-Health System for over 8 years. He has served as President of the Society for Technology in Anesthesiology and he co-founded the Pediatric Sedation Research Consortium/Society for Pediatric Sedation. Nationally, he has served on multiple boards including the executive board of the High Value Healthcare Collaborative founded by Dartmouth-Health, Mayo Clinic, and Intermountain Healthcare. Currently, he is the Chief Quality Officer for the Family Heart Foundation guiding the Flag, Identify, Network and Deliver (FIND) Collaborative Learning Network.

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

Roger S. Blumenthal, MD 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 and Cardiology fellowship training at The Johns Hopkins University School of Medicine before joining the Hopkins Cardiology faculty. Dr. Blumenthal was the 2018 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. In 2022, he was award the Susan McDonald for his sponsorship of women in Academic Medicine at Hopkins. 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 cardiovascular disease and 2: the optimal management of atherosclerotic vascular disease. He is an expert in the pathogenesis, treatment, and prevention of cardiovascular disease.

Speaker Bios 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 700 articles dealing with many aspects of coronary heart disease and cardiovascular disease management. Together with Dr. Mariell Jessup, he was the co-chair of the ACC/AHA subcommittee that oversaw the updates of all of the Prevention related guidelines (Blood Pressure, Cholesterol, Risk Asssment). 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. An experienced writer, Dr. Blumenthal is on the editorial board of Circulation and Cardiology Today. 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 who trained at Hopkins such as Drs. Khurram Nasir, Michael Blaha, Seth Martin, J. Bill McEvoy, Chiadi Ndumele, Erin Michos, Ty Gluckman, Samia Mora, Seamus Whelton, Parag Joshi, Garima Sharma, Michael Silverman, and Haitham Ahmed. Dr. Blumenthal is a highly cited researcher with an h-index greater than 120.

Robert A. Bradway Chairman Cheif Executive Officer Amgen Board Member The Boeing Company

Robert A. Bradway is Amgen’s chairman and chief executive officer. He became chairman in January 2013 and chief executive officer in May 2012. Bradway served as the company’s president and chief operating officer from May 2010 to May 2012, and was appointed to the Amgen Board of Directors in October 2011. He joined the company in 2006 as vice president, Operations Strategy, and served as executive vice president and chief financial officer from April 2007 to May 2010. Prior to joining Amgen, Bradway was a managing director at Morgan Stanley in London where, beginning in 2001, he had responsibility for the firm’s banking department and corporate finance activities in Europe. He joined Morgan Stanley in New York as a health care industry investment banker in 1985 and moved to London in 1990. Bradway is a member of the board of directors of The Boeing Company, chairing its Finance committee and serving on its Governance and Public Policy committee. He also serves as a board member of the W. M. Keck Foundation and the Pharmaceutical Research and Manufacturers of America (PhRMA). In addition, Bradway serves on the board of trustees of the University of Southern California, he is an Emeritus Director of the CEO Roundtable on Cancer, and he is a member of the American Heart Association CEO Roundtable, which is helping the Association meet its goal of improving the cardiovascular health of all Americans. Bradway holds a bachelor’s degree in biology from Amherst College and a master’s degree in business administration from Harvard University.

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Speaker Bios

Yvonne Commodore-Mensah, PhD, MHS, RN Associate Professor John Hopkins University Board Member Preventive Cardiovascular Nurses Association (PCNA)

Yvonne Commodore-Mensah, PhD, MHS, RN is a cardiovascular nurse epidemiologist whose current program of research seeks to reduce the burden of cardiovascular disease risk among Africans locally (United States) and globally (sub-Saharan Africa) through community-engaged research. Her research expertise includes immigrant health, global health, cardiovascular disease epidemiology, and social determinants of health. She is the principal investigator of the ADHINCRA Study, a randomized control trial to address hypertension control in Ghana and the African Immigrant Health Study, which is examining the health of African immigrants in the Baltimore-Washington metropolitan area. Dr. Commodore-Mensah is a fellow of the American Heart Association and was awarded the American Heart Association (AHA) Martha N. Hill New Investigator Award in 2016. She is a fellow and board member of the Preventive Cardiovascular Nurses Association. She serves on the writing committee of the 2019 American College of Cardiology/American Heart Association Clinical Performance and Quality Measures for Adults with High Blood Pressure. Dr. Commodore-Mensah is chief executive officer of the African Research Academies for Women, a non-profit which seeks to address gender disparities in science, technology, engineering, and mathematics in Africa.

Aditi Durga Family Heart Advocate Family Heart Foundation Individual with FH

Aditi Durga is a passionate advocate for the Family Heart Foundation and brings her unwavering commitment to protect families from the devastating effects of Familial Hypercholesterolemia (FH) and high Lp(a). She grew up in Trinidad and Tobago highlighting one of the underrepresented communities we are thriving to serve on a global scale. Heart disease was no stranger as she witnessed her family’s battles with health, considering it a ‘normal’ part of life. Her grandmother’s passing unveiled a shared fate of high cholesterol. The last milestone she shared with her father was her graduation from the University of Massachusetts, Amherst. A few months after, she received a phone call letting her know that her 59-year-old daddy had a massive heart attack. Tragically, he died one month later leaving her and her three brothers next in line for battle. A year after their father’s passing two of her older brothers experienced cardiac events. One brother suffered a stroke at 32 years, and another had a heart attack at just 25 years. Taking her fate into her own hands, she moved to America in hope of a better chance in life. Her own health struggles began after seeing her total cholesterol number over 400 with little intervention prescribed, leading to her first diagnosed mini stroke that finally gave her the right diagnosis. Her story is one of resilience and hope, emphasizing the importance of early diagnosis and treatment to break the cycle of heart disease.

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Speaker Bios

Daphne Ferdinand, PhD, RN Executive Director Healthy Heart Community Prevention Project

Daphne Ferdinand, PhD, RN is the Executive Director of the Healthy Heart Community Prevention Project, a non-profit corporation whose mission is to promote heart health and to eliminate disparities associated with cardiovascular disease in vulnerable communities. Dr. Ferdinand has over 30 years of community service advocating for cardiovascular health with the provision of heart healthy educational programs in the greater New Orleans area. Her organization conducted community programs which focused on educating parents and caregivers on maintaining a healthy weight, diabetes prevention and management, leading the NOLA Diabetes Project, promoting flu/Covid-19 vaccine campaigns, community-based research to increase hypertension medication adherence, in addition to assisting community organizations with health promotion and heart disease prevention programing. Dr. Ferdinand is a life-time member of the National Black Nurses Association, a member of the Preventive Cardiology Nurses Association, the Association of Black Cardiologists, and the American Heart Association. Dr. Ferdinand serves as the co-chair of the Association of Black Cardiologists’ community programs committee and serves on community advisory boards for the “Church-based Health Intervention to Eliminate Racial Inequalities in Cardiovascular Health” (CHERISH) research study at Tulane University School of Public Health and the Louisiana Clinical and Translational Science Center (LA CaTS) Community Engagement and Outreach Core. She is also an advanced master gardener with the LSU Ag Center and assists community based organizations with horticulture activities to promote the consumption of fresh fruits and vegetables. Dr. Ferdinand has co-authored publications focusing on topics such as cardiovascular disparities, management of hypertension, diabetes and the metabolic syndrome, U.S. fast food consumption, and community-based approaches to CV disease prevention. In 2021, she was the recipient of the Association of Black Cardiologists, Dr. Walter M. Booker, Sr. Health Promotion Award. Dr. Ferdinand received her Bachelor of Science in Nursing from Dillard University and Master of Nursing degree from LSU Health Science Center. She received her PhD in Nursing from Southern University and A & M College School of Nursing in Baton Rouge, LA. She is a community advocate who believes in “Helping People to Help Themselves”.

Keith C. Ferdinand, MD Gerald S. Berenson Endowed Chair in Preventive Cardiology Professor of Medicine John W. Deming Department of Medicine Tulane University School of Medicine Board Member Family Heart Foundation Keith C. Ferdinand, MD is Professor of Medicine at the Tulane University School of Medicine and previously Professor of Clinical Pharmacology at Xavier University, New Orleans and Clinical Professor of Medicine at Emory University, Atlanta, Georgia. Dr. Ferdinand received his medical degree from the Howard University

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Speaker Bios College of Medicine in Washington, DC. He is board-certified in internal medicine and cardiovascular disease, certified in the subspecialty of nuclear cardiology, and a specialist in clinical hypertension. Dr. Ferdinand is a member of the Association of University Cardiologists, past Chair of the National Forum for Heart Disease and Stroke Prevention and prior Chief Science Officer and chair of the Association of Black Cardiologists (ABC). He has also served on the board of the American Society of Hypertension, the Southwest Lipid Association, and International Society of Hypertension in Blacks. He is presently on the board of the Partnership to Advance Cardiovascular Health, National Lipid Association, and the American Society for Preventive Cardiology. He is presently chair of the ABC Access to Care Initiative and co-chair of the ABC CME Committee. ABC Access since 2016 is a multi-organizational working group targeting disparities in the access to evidence-based medications and devices. He also serves the AHA National Hypertension Control Initiative (NHCI) Advisory Group, reflecting his unique perspective, experience, and expertise in hypertension. This group provides leadership and guidance to our national blood pressure initiative in the areas of clinical care and community health as an AHA cooperative agreement with the Office of Minority Health (OMH) and the Health Resources and Services Administration (HRSA).He serves advisor to the National Association of Community Health Centers Million Hearts initiative with the CDC. He has conducted numerous trials in hypertension lipids, cardiometabolic risk, and cardiovascular disease especially in racial/ethnic minorities, with over 250 peer-reviewed publications and lectures nationally and internationally. In addition to his clinical work, he has participated in numerous clinical education activities in the community, locally and nationally, regarding eliminating disparities during the COVID-19 pandemic. He has engaged in numerous opportunities and advisory boards that helped navigate and advise the lay public and providers on COVID-19 planning, safety protocols, education, and vaccination initiatives. He serves on the Louisiana Governor’s COVID-19 Health Equity Task Force, the NIH Community Engagement Alliance (CEAL), and Louisiana Vaccination Action Committee (VAC). These advisory boards have been crucial in reaching the most vulnerable communities. Furthermore, as the president of Healthy Heart Community Prevention Project (HHCPP) 501c3 nonprofit health organization in New Orleans, Dr. Ferdinand has offered community lectures, conversed with faith and community centers, politicians, and the local radio on racial and ethnic disparities during the COVID-19 pandemic and effective vaccination strategies. The HHCPP ,with Dr. Ferdinand, constructed and early 2022 initiated ,an 8 week intensive direct community education program empowering seniors in the Lower Ninth Ward of New Orleans in person learning on understanding and managing their diabetes. Past and ongoing community events to address disparities with HHCPP are described with pictures at www.healthyheartcpp. org In 2004, Dr. Ferdinand received the Louis B. Russell, Jr. Memorial Award of the American Heart Association. Other awards include the Congressional Black Caucus Health Trust for journalism, the Charles Drew award for medical excellence from the National Minority Quality Foundation, the Wenger Award for Medical Leadership by WomenHeart and ABC Spirit of the Heart Distinguished Leadership Award and in the 2019 Xavier University Champion Award for health equity and AHA 2019 James B. Herrick Award for Outstanding Achievement in Clinical Cardiology. He received the 2021 and again in 2022 Health Care Heroes honor, for health care professionals in the New Orleans area.

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Speaker Bio

Eugenia Gianos, MD Director of Women’s Heart Health Lenox Hill Hospital Director Cardiovascular Prevention for Northwell Health

Eugenia Gianos, MD is a Professor of Cardiology at the Zucker School of Medicine. She is System Director for Cardiovascular Prevention at Northwell Health, Director of the Women’s Heart Program at Lenox Hill and for the Western region through the Katz Institute for Women’s Health. She is board certified in medicine, cardiology, nuclear cardiology, echocardiography and she is certified in lipidology. She completed her residency and fellowship training at North Shore and Long Island Jewish Hospitals before becoming an attending at NYU Langone Medical Center for 11 years. Dr. Gianos has a specific interest in diet, lifestyle and risk modification and runs an annual CME conference aimed at educating clinicians in this often underemphasized area of medical education. She directs the Northwell Preventive Cardiology Fellowship, an independent fellowship aimed at training clinicians to recognize and optimize cardiovascular risk. Her research interests include improving systems for CV prevention and CV risk factor control particularly in young patients and women. She has led several initiatives for assessing patient diets through integrated EHR questionnaires, increasing utilization of guideline directed medical therapies through best practice alerts and provider education, and improving the nutritional content of foods served throughout hospital systems. She has led a single center randomized controlled trial assessing various prevention strategies (IMPACT) targeting optimal therapies and risk factor modification. Dr. Gianos currently directs multiple clinical, research, quality and teaching programs to improve cardiovascular health in the Northwell health system, with a specific focus on cardiovascular prevention in women. She is also a leader in multiple societies and speaks regularly at major conferences. Dr. Gianos is the past president of the Northeast chapter of the National Lipid Association and is on the national board of the National Lipid Association and on the board of the directors of the American Board of Clinical Lipidology. She is the chair elect for the Prevention Council of the American College of Cardiology, chair elect of the ATVB- Clinical Lipidology, Lipoprotein, Metabolism & Thrombosis Committee and on the Executive Leadership Team for the New York American Heart Association GoRed campaign.

Bruce Gordon Individual living with high Lp(a)

Bruce Gordon is a sales and marketing professional with over 20 years of experience from Denver, Colorado. He was an athlete when he attended UCLA and has continued being active including being the first recorded person to swim Coeur d’Alene Lake in Idaho. Bruce knew heart disease ran in his family, but he had no idea he was living with high lipoprotein(a), also known as Lp(a), until he had a heart attack at the airport. He survived after an extensive stay in the ICU and is now dedicating his time educating and raising awareness about the importance of knowing your Lp(a) levels. He wants to do all he can to prevent heart disease and save lives. Bruce has been married to his wife, Jan, for 33 years. They have two daughters, Grace and Claire, and two sons-in-law, Cam and Andrew. 2023 FAMILY HEART GLOBAL SUMMIT |

Speaker Bio

Daniel Scott Himmelstein, PhD Individual living with FH FlND FH flagged individual

Daniel first encountered the term “familial hypercholesterolemia” during his PhD in Biomedical Informatics while browsing through lists of all known diseases. His goal was to create a knowledge graph and use machine learning to uncover new treatments. Daniel again encountered the term FH in his current role at biotech startup Related Sciences, when working to bridge genetic insights from uncommon Mendelian diseases to address common complex diseases. But little did Daniel suspect that he could be harboring FH this whole time. Even after learning of his high LDL cholesterol and Lp(a), it seemed implausible to Daniel that he could have a genetic condition, having never experienced a symptom and deciding himself free of all those diseases with long names that he encountered in his research. But then Dr. Mary McGowan identified Daniel’s chart through the FIND-FH screening at Dartmouth Health. Upon learning more about FH, everything clicked: stubbornly high lipid levels that did not respond to improvements in diet and exercise, elevated maternal Lp(a), and a cousin passing from ASCVD. Daniel looked at his whole genome sequencing, which he had gotten from a direct-to-consumer vendor out of curiosity, and found he was in the 100th percentile for some polygenic risk scores of lipids and cardiovascular disease! Daniel is lucky that he discovered his risk in his 30s with many critical decades ahead to stave off atherogenesis.

Allison Jamison, MBA Assistant Dean of Admissions Daytime MBA Program Dukes Furqua School of Business Board Member, Treasurer Family Heart Foundation

Allison serves the Family Heart Foundation as a volunteer Family Heart Advocate for Awareness and as a Board Member. 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.

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Speaker Bio

Amit Khera, MD Professor of Medicine Director of Preventive Cardiology Co-Director of the Familial Hypercholesterolemia Clinic University of Texas, Southwestern Medical School

Amit Khera, MD is Professor of Medicine at the University of Texas, Southwestern Medical School in Dallas, Texas where he serves as Director of Preventive Cardiology, Associate Chief of Cardiology for Faculty Development, Co-Director of the Familial Hypercholesterolemia Clinic, and holder of the Dallas Heart Ball Chair in Hypertension and Heart Disease. His clinical and research interests include the primary and secondary prevention of coronary artery disease, focusing on risk assessment and risk factor modification in those with premature and familial disease. Dr. Khera received his undergraduate degree in American History from the University of Pennsylvania. He obtained his medical degree from Baylor College of Medicine where he served as class president and was inducted into the Alpha Omega Alpha honor medical society. He completed an Internal Medicine Residency at Brigham and Women’s Hospital, Harvard Medical School, followed by a Cardiology Fellowship at the University of Texas, Southwestern Medical Center. He also completed his Masters degree in Epidemiology at the Harvard School of Public Health. He is Past President of the American Society for Preventive Cardiology and is currently Chair of the AHA Scientific Sessions Planning Committee. Dr. Khera is an Associate Editor for the American Journal of Preventive Cardiology and Circulation. Dr. Khera has contributed over 200 publications in the field of preventive cardiology and has been named Best Doctor in Dallas and Texas SuperDoctor every year since 2014. He was previously Associate Program Director and Program Director of the Cardiology Fellowship at UT Southwestern from 2005-2020.

Joshua W. Knowles, MD, PhD Assistant Professor of Medicine Stanford University Medical Center Vice Chairman of the Board Chief Research Advisor Family Heart Foundation

Joshua Knowles, MD, PhD 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).

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Speaker Bio 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.

Florian Kronenberg, MD, MAE Professor Director of the Institute Institute of Genetic Epidemiology, Medical University of Innsbruck

Florian Kronenberg, MD, MAE received his MD from the University of Innsbruck, Austria. After his training in Medical Genetics in Gerd Utermann’s lab, he worked with Roger R. Williams and Steve Hunt at the University of Utah, USA. Later, he headed the Research Unit “Genetic Epidemiology” at the Helmholtz-Center Munich. In 2004, he became full professor and head of the Institute of Genetic Epidemiology at the Medical University of Innsbruck. He is a Member of the Academia Europaea. Dr. Kronenberg’s main research interests are genetic and clinical epidemiological studies on lipoprotein(a) as one of the most important genetic risk factors for cardiovascular disease. His team has probably the largest collection of samples with more than 40.000 individuals with in depth characterization of the LPA gene including data from Western blot analyses. He is Co-Editor of “Atherosclerosis” and served as workgroup member on several guideline and consensus initiatives (K/DOQI, KDIGO and EAS). He chaired the most recent EAS Consensus Statement on Lp(a) (together with Samia Mora and Erik Stroes). Florian Kronenberg has published roughly 500 papers including 400 original papers and about 90 review articles, editorials and book chapters. He has an H-index of 96 (Scopus) and 112 (Google Scholars) with roughly 51,000 citations.

Alicia N. Lyle, PhD Lead Research Chemist Division of Laboratory Sciences Centers for Disease Control and Prevention

Alicia Lyle, PhD is a Research Chemist in the Protein Biomarker Laboratory in Clinical Chemistry Branch of the Division of Laboratory Sciences at the Centers for Disease Control and Prevention. Dr. Lyle joined the CDC in 2019. Prior to moving to the CDC, Dr. Lyle was an Assistant Professor of Medicine at Emory University. She leads and oversees programs for analytical method development and for the standardization and

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Speaker Bio harmonization of chronic disease biomarker tests performed in clinical and epidemiological research, patient care, and research. In this function, she collaborates with major stakeholders at the national and international levels to help improve the accuracy and comparability of clinical assays for the diagnosis of chronic diseases. Dr. Lyle has worked in the field of Cardiovascular Disease Research for 20 years. She is a Fellow of the American Heart Association, a member of the Circulation Research editorial board, and is a full-time reviewer for the AHA’s Vascular Wall Biology Study Section. As vice-chair and co-author, she is currently helping to revise the EP-30 CLSI document. Dr. Lyle also serves as a committee member of the IFCC Commutability and Metrological Traceability Working Group, the IFCC Apolipoproteins by Mass Spectrometry Working Group, and the AACC Pediatric Reference Intervals Working Group. Dr. Lyle has contributed to 30 scientific publications.

Diane MacDougall, MS Vice President of Science and 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.

G.B. John Mancini, MD Professor of Medicine, Division of Cardiology Scientific Director, CardioRisk Clinic Vancouver Hospital Director, Cardiovascular Imaging Research Core Laboratory (CIRCL) Centre for Cardiovascular Innovation University of British Columbia G.B. John Mancini, MD received his MD degree from the University of Toronto (1977), did his residency at St. Michael’s and Toronto General Hospitals and was a Cardiology and Research Fellow at the University of California at San Diego. After a year in the rank of Clinical Assistant Professor at U.C. San Diego, he joined the faculty of the University of Michigan in 1983. He achieved the rank of tenured Professor and also became the Chief of the V.A. Section of Cardiology and Associate Chief of the University of Michigan, Division of Cardiology. He then became Chair of Medicine at the University of British Columbia, 1992-2002. Dr. Mancini remains a tenured Professor of Medicine at the University of British Columbia and a member of the Centre for Cardiovascular Innovation. He directs an imaging-based research program (Cardiovascular Imaging Research Core Laboratory, CIRCL) that includes facilities for quantitative coronary angiography, ultrasound analyses (coronaries, carotids and brachial artery for atherosclerosis and endothelial function

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Speaker Bio assessments) and cardiac computed tomography. This program has been actively funded for over 30 years, originating at the University of Michigan and transferred to UBC in 1992. Dr. Mancini’s interest focuses on the integration of multi-modality cardiac imaging in multicenter clinical trials for the assessment of structural and functional aspects of coronary atherosclerosis and for primary and secondary cardiovascular risk reduction. He also remains active in clinical trials using novel lipid lowering and anti-hyperglycemic agents. He has published over three hundred journal articles, abstracts, books and book chapters. He is a Fellow of the American College of Cardiology, prior Governor of the American College of Cardiology (British Columbia), a member of the Circulation Council of the American Heart Association, Past President of the Canadian Society for Clinical Investigation, past Editorial Board Member of the Journal of the American College of Cardiology and the American Journal of Cardiology and past Associate Editor of Atherosclerosis. He serves as a reviewer for many journals and is currently a member of the editorial boards of the Canadian Journal of Cardiology, and the International Journal of Cardiac Imaging. Dr. Mancini is the former Research Director of the UBC Division of Cardiology during where he developed processes to help mentor new faculty by providing competitive funding for pilot projects intended to help start thematic research careers. Through development of research infrastructure support, the role continues to help facilitate development of competitive grant submissions to external agencies. Success in this arena is fully integrated with the recently established Centre for Cardiovascular Innovation at UBC which serves as an umbrella organization for excellence in all aspects of cardiovascular research from within the Division but also provincially, nationally and internationally. Dr. Mancini founded the CardioRisk Clinic at Vancouver Hospital and currently serves as its Scientific Director. The focus of the CardioRisk Clinic is to foster innovation in novel CV risk detection and therapy, to support FH Canada for the identification and treatment of patients with Familial Hypercholesterolemia and to support the SAVE BC program to identify patients and families with very early atherosclerotic heart disease in order to understand the causes and identify novel risk factors. Provision of comprehensive primary and secondary CV preventive therapies also serves to create a unique environment for clinical training of residents and fellows in parallel with clinical research opportunities.

Mary P. McGowan, MD Chief Medical Officer Family Heart Foundation

Mary P. McGowan, MD received her medical degree from the University of Massachusetts. She remained at the University of Massachusetts Medical Center for both internship and residency and completed her fellowship at Johns Hopkins Hospital. Dr. McGowan is the Chief Medical Officer of the Family Heart Foundation. She is an Assistant Professor of Medicine at The Geisel School of Medicine at Dartmouth and practices in the Lipid Clinic at Dartmouth Hitchcock Heart and Vascular Center where she is implementing the Family Heart Foundation’s Flag Identify Network & Deliver (FIND) FH. She is the author of numerous peer-reviewed articles and 4 books and has been the principal investigator on over 30 national and international clinical trials and has lectured widely in the United States, Canada, Europe and Asia on cholesterol metabolism.

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Speaker Bio Maxima Mendez-Castillo, MD President Dominican Society of Cardiology, Lipids and Atherosclerosis Council Founder and CEO Cardiovascular Lipid Club Dominican Republic Associate Researcher Iberoamerican University Research and Innovation Hub Maxima Mendez Castillo, MD, internist cardiologist, Master in lipids, graduated from the Autonomous University of Santo Domingo (UASD) in the Dominican Republic, as well as training in critical post-surgical cardiovascular care and coronary care at the National Institute of Cardiology Ignacio Chavez in Mexico. Currently assistant physician of the non-invasive cardiology department of the cardiovascular center Cedimat in the Dominican Republic. Has participated in multiple national and international conferences, as well as several courses and symposiums on cardiovascular medical updating and a diploma in strategic health management.

George A. Mensah, MD Director Center for Translation Research and Implementation Science (CTRIS) Senior Advisor, Office of the Director National Heart, Lung, and Blood Institute (NHLBI), NIH

George Mensah, MD is a clinician-scientist who currently serves as the Director of the Center for Translation Research and Implementation Science at the National Heart, Lung, and Blood Institute (NHLBI), a part of the National Institutes of Health (NIH). In this role, Dr. Mensah leads a trans-NHLBI effort to advance latestage translational research and implementation science to address gaps in the prevention, treatment, and control of heart, lung, and blood diseases and the elimination of related health inequities. His goal is to maximize the population health impact of advances made in fundamental discovery science and pre-clinical or early-stage translational research. Dr. Mensah is an honors graduate of Harvard University. He obtained his medical degree from Washington University and trained in Internal Medicine and Cardiology at Cornell. His professional experience includes more than 20 years of public health service between the U.S. Department of Veterans Affairs, the Centers for Disease Control and Prevention (CDC), and the NIH. In addition to his public service, Dr. Mensah had 15 years of experience in direct patient care, teaching, and research at Cornell, Vanderbilt, and the Medical College of Georgia (MCG). He was a full professor with tenure at MCG and is currently a Visiting Full Professor at the University of Cape Town, South Africa. Dr. Mensah has been admitted to fellowships in several national and international societies including the American Heart Association, American College of Cardiology, and the European Society of Cardiology. He is an Honorary Fellow of the College of Physicians of South Africa. He maintains active collaboration with several international groups to advance research on the global burden of diseases and risk factors.

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Speaker Bio

Brian S. Mittman, PhD Research Scientist Department of Research and Evaluation, Division of Health Services Research and Implementation Science Kaiser Permanente Board Member Family Heart Foundation

Brian S. Mittman, PhD is a Senior Scientist at the Kaiser Permanente Southern California Department of Research and Evaluation with additional affiliations at the University of Southern California (USC) and University of California at Los Angeles (UCLA), where he co-leads the UCLA Clinical and Translational Science Institute (CTSI) Implementation and Improvement Science Initiative. He previously served as a Senior Scientist at the US Department of Veterans Affairs (VA) Greater Los Angeles Healthcare System and a Visiting Professor in the UCLA School of Public Health and Anderson Graduate School of Management. Dr. Mittman convened the planning committee that launched the journal Implementation Science and served as co-editor in chief from 2005-2012. He was a founding member of the US Institute of Medicine Forum on the Science of Quality Improvement and Implementation and chaired the National Institutes of Health (NIH) peer review panel on Dissemination and Implementation Research in Health in 2007 and 2010. He directed VA’s Quality Enhancement Research Initiative (QUERI) from 2002-2004. He currently serves on the Methodology Committee for the Patient-Centered Outcomes Research Institute (PCORI), where he leads the Methodology Committee initiative to develop and disseminate methods standards for studying complex health interventions. He is a member of the National Heart, Lung and Blood Institute (NIH) Board of External Experts, the Association of American Medical Colleges’ Advisory Panel on Research, and advisory boards for several additional U.S. and international research programs in implementation science. He is a past member of the Academy Health Methods Council and Education Council. He has led or supported numerous implementation and improvement science studies and has taught implementation science throughout the US and abroad.

Nathalie Moise, MD, MS Assistant Professor and Internist Department of Medicine Columbia University, Irving Medical Center

Nathalie Moise, MD, MS is an internist and Florence Irving Associate Professor of Medicine at Columbia University Irving Medical Center. She is the Director of the Center for Behavioral Cardiovascular Health’s Im_Sci Lab, an implementation science lab dedicated to testing scalable mechanistically driven digital behavioral health interventions that impact cardiovascular disease and mental health disparities. Dr. Moise has conducted health services research for more than 10 years and is PI/MPI of several federally funded implementation science R01s (NHLBI, AHRQ, NCI, PCORI). Her research focuses on hybrid effectiveness-implementation designs to test behavioral activation, patient-preference and shared decision-making digital health interventions to support implementation and sustainability of evidence-based practices (as well as de-implementation when appropriate) in primary care and cardiology settings. She is the Chair of the Columbia University Physician and Surgeon’s Lead Committee at the medical school tasked with mentoring

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Speaker Bio medical students in integrating implementation science and public health into the medical school curriculum. Dr. Moise is also faculty for the NHLBI/UCSF Research in Implementation Science for Equity (RISE) program and co-leads the Columbia’s CTSA Implementation Science Working group, which fosters training in implementation science for junior faculty and trainees at Columbia.

Khurram Nasir, MD Professor of Medicine Weill Cornell Medical College Chief of Cardiovascular Prevention & Wellness Houston MethodistInternal Medicine Columbia University

Khurram Nasir MD MPH Msc is the Chief of Cardiovascular Disease Prevention and Wellness, as well as, Chief Division of Health Equity & Disparities Research and Co-Director for Center for Outcomes Research at Houston Methodist. He is also the inaugural Director for the newly founded Center for Cardiovascular Computational Health & Precision Medicine (C3-PH). He is Professor of Medicine at Weill Cornell Medical College and Professor of Cardiology at Houston Methodist Academic Institute. Dr. Nasir received his MD from Pakistan, followed by Master’s degree in public health at John Hopkins University. Dr. Nasir completed his internal medicine residency at Boston Medical Center and cardiology fellowship at Yale University. He also received postdoctoral research training at the division of cardiology at Johns Hopkins Hospital and was recipient of NIH T-32 fellowship at Massachusetts General Hospital, Harvard University. In 2017, he earned a Master’s degree in Health Economics and Policy Management from London School of Economics & Political Science, where Dr Nasir was recently appointed as Visiting Professor. His NIH funded clinical and research interests in lies in role of precision medicine for cardiovascular disease risk assessment and tailored management to prevent risk of heart disease. He also pursues system approaches and leverages big data applications for implementing cost-efficient health care processes, as well as addressing health equity & healthcare related financial burden among vulnerable groups. He has published more than 800 high impact articles published in top academic journals. He is currently Associate Editor for the journal “Circulation: Cardiovascular Quality and Outcomes”. In recognition of his contributions, he was recognized with 1) the “Johns Hopkins Distinguished Alumni Award” in 2013, which honors alumni who have typified the Johns Hopkins tradition of excellence and brought credit to the University by their personal accomplishment, professional achievement, or humanitarian services, and, 2) “Arthur S. Agatston Cardiovascular Disease Prevention Award” in 2020 that recognizes individuals whose pioneering efforts have saved lives from the leading killer throughout the world, coronary artery disease.

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Speakers

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

Børge Nordestgaard, MD, DMSc studied and worked in Copenhagen, New York, and London. Prof. Nordestgaard has for more than 30 years continued his interest in the pathogenesis, diagnosis and treatment of familial hypercholesterolemia, hyperlipidemia, lipoprotein(a), atherosclerosis, diabetes 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 four phase 3 endpoint cardiovascular randomised intervention trials. Prof. Nordestgaard has supervised 71 Ph.D. students and 34 postdoctoral fellows, and has published 900 original articles and 140 reviews, book chapters, consensus statements, & editorials. His H-index is 150 in Web of Science and he is listed among the top 0.1% researchers worldwide with the most highly cited papers. Original articles include publications in New England Journal of Medicine, Lancet, Journal of the American Medical Association, Nature, Science, Nature Genetics, British Medical Journal, Lancet Diabetes Endocrinology, Circulation, European Heart Journal, Journal of the American College of Cardiology and JAMA cardiology.

Sydney Phillips Family Heart Advocate Family Heart Foundation Individual living with HoFH

Sydney is 23 years old from Pittsburgh, Pennsylvania. She was originally diagnosed with HeFH at at the age of 14 after a pre-op lipid screen showed her LDL cholesterol was greater than 700 mg/dL. After 4 years of unsuccessful treatment on oral medications, she was diagnosed with HoFH on her 18th birthday, leading to her first cardiac event at 19 years old. This diagnosis changed her life forever; she began weekly LDL apheresis treatments, biweekly PCSK9 inhibitor injections, and eventually monthly Evkeeza infusions. She is extremely grateful for the aggressive treatment she has received, and her experiences have fueled her fire for FH community education and patient advocacy. Sydney is a 2022 graduate from the University of Pittsburgh with a Bachelor of Science in Nursing, and has been working as a Labor & Delivery Registered Nurse for the last year. Outside of work, Sydney enjoys spending time with her friends and her cat, Phoebe, cycling, going on walks in her neighborhood, baking, and trying every coffee shop in the city of Pittsburgh. Sydney is so excited for the opportunity to attend the Family Heart Global Summit and contribute to the monumental change this organization is making.

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Speakers

Daniel J. Rader, MD Seymour Gray Professor of Molecular Medicine Chair, Department of Genetics Perelman School of Medicine, University of Pennsylvania Chairman of the Board Chief Scientific Advisor Family Heart Foundation Daniel Rader, MD is the Seymour Gray Professor of Molecular Medicine at the Perelman School of Medicine of the University of Pennsylvania. He serves as the Chair of the Department of Genetics as well as the Chief of the Divisions of Human Genetics in the Departments of Medicine and Pediatrics. He is also Associate Director of Penn’s Institute for Translational Medicine and Therapeutics and is co-director of the Penn Medicine Biobank. Dr. Rader’s research focuses on the human genetics and functional genomics of lipoprotein metabolism, atherosclerosis, and cardiometabolic disease. He has had a long interest in novel therapeutic approaches to unmet medical needs in the treatment of severe dyslipidemia. He led the scientific and clinical development of an inhibitor of microsomal transfer protein for the treatment of homozygous familial hypercholesterolemia and has contributed mechanistic insights related to a number of therapeutic approaches to dyslipidemia. Dr Rader is also a leader in research in HDL metabolism and function. Dr. Rader trained in internal medicine at Yale-New Haven Hospital and in human genetics and physiology of lipoprotein metabolism at the National Institutes of Health prior to joining the Penn faculty. He is a recipient of several national and international awards, including the 2023 Virgil Brown Distinguished Achievement Award from the National Lipid Association. He has been elected to the National Academy of Medicine and the American Academy of Arts and Sciences. He is currently the Chief Scientific Advisor and Chair of the Board of the Family Heart Foundation.

Gissette Reyes-Soffer, MD Assistant Professor of Medicine Columbia University, Irving Medical Center Scientific Advisor Family Heart Foundation

Gissette Reyes-Soffer, MD is an Assistant Professor of Medicine at the College of Physicians and Surgeons, Columbia University, Irving Medical Center. She completed her Doctor in Medicine degree from the Universidad Catolica Madre y Maestra in Santiago, Dominican Republic. She completed her fellowship training under an NIH T32 funded position at her current institution. Her early faculty training focused on describing the metabolic pathways that get affected by different oral diets and novel lipid lowering therapies. Alongside her mentors and collaborators she developed novel methods to study these lipid regulating pathways in humans using stable isotope IV infusions. These pathways are essential to the understanding of liver and cardiovascular disease. Her lab is one of three active laboratories around the world that perform these studies. Dr. Reyes-Soffer work has been published in top journals, such as Science and Translational Medicine, Circulation and the Journal of Clinical Investigation. She was a member of the NHLBI work group on lipoprotein(a) (recommendations published in the Journal American College of Cardiology), she was also the Chair of the American Heart Association Statement on Lp(a). She is a current Associate Editor of the Journal of Atheroscle-

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rosis, a Board Member of the Journal of Lipid Research and a peer reviewer for other top journals. She is, also, a member of the NIH MPOR study section which reviews training grants and career mentoring awards to senior investigators (K23 and K24). She teaches numerous lectures on lipid/lipoprotein biology and physiology and its role in cardiometabolic disease within the Institute of Human Nutrition, the department of Pharmacology and Precision Medicine course within the CUIMC CTSA. Dr. Reyes-Soffer is a member of the American Heart Association, European Atherosclerosis Society and American Society for Biochemistry and Molecular Biology. She is highly committed to engaging and supporting the success of diverse students, trainees, faculty and scientific teams. She is a co-founder of ASPIRE!, a funded peer/near peer mentoring group at Columbia University. As a member of the American Heart Association, Atherosclerosis Thrombosis and Vascular Biology Council she is the past chair of the Diversity Committee. Additionally, she serves as chair for the American Heart Association Scientific Sessions planning committee for the ATVB council, the membership committee and the American Heart Association portfolio management committee.

Courtney Riley, MD Pediatrician Gifford Healthcare Board Member Family Heart Foundation

Courtney Riley, MD is a practicing pediatrician in Central Vermont. She has a family history of elevated Lipoprotein (a) and tragically lost her sister to a fatal heart attack at just 23 years old. She has since joined the Family Heart Foundation as an Advocate for Awareness in an effort to educate providers, patients and families about this incredibly common yet wildly under-recognized condition. Dr. Riley is a proud graduate of Clarkson University and attended medical school at New York Medical College. She completed her residency in pediatrics at the University of Vermont Children’s Hospital. She is certified by the American Board of Pediatrics and a fellow of the American Academy of Pediatrics. She serves on her hospital’s ethics committee and has played an active role in helping her practice gain statewide and national recognition for outstanding vaccination rates. As a board member, she has deepened her commitment to the organization and more effectively supports the move to include Lp(a) awareness and research to our mission. She is hopeful that her involvement will continue to allow her to better advocate for universal screening, early detection, increased education, and the discovery and implementation of appropriate interventions. She is honored and proud to do this work in memory of her sister and grandmother. She is further motivated to make a difference for her family, friends, and patients who live with elevated Lp(a), both known and unknown.

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Speaker Bios

Anne Tybjærg-Hansen, MD, DMSc Chief Physician, Department of Clinical Biochemistry, Section for Molecular Genetics, Rigshospitalet Clinical Professor, Clinical Biochemistry with Focus on Translational Molecular Cardiology Copenhagen University Hosptial

Anne Tybjærg-Hansen, MD, DMSC is the Chief Physician at the Department of Clinical Biochemistry at Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark. She also servces as clinical Professor of Clinical Biochemistry with Focus on Translational Molecular Cardiology at the Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark. Dr. Tybjærg-Hansen graduated as medical doctor from the University of Copenhagen in 1981. She is board certified as a specialist in Clinical Biochemistry. Scientific education included one year at the University of Copenhagen and the Lipid Clinic at Righospitalet, Copenhagen University Hospital, three years at Hagedorn Research Laboratory, Gentofte, Denmark, and three years at British Heart Foundation’s Molecular Biology Research Group, London, UK. Dr. Tybjærg-Hansen’s research has focused on the genetics and genomics of cardiovascular disease and related diseases in large prospective studies of the general population (>150.000 participants). Recent focus areas include Mendelian randomization, polygenic risk scores for dyslipidemia and CAD, and amyloidosis and amyloidosis-related heart disease and other diseases. Dr. Tybjærg-Hansen is a current member of the steering committees of the Copenhagen City Heart Study and the Copenhagen General Population Study, and Executive Editor for European Heart Journal from September 2020 and ongoing. Honors include: Honorary member, Czeck Atherosclerosis Society 2017. EAS’ Anitschkow Prize for 2018. JLR Distinguished Lecture, ISA Toronto 2018. Albert Latner Memorial Lecture, Univ. of Newcastle 2018. The KFJ Prize for 2018, University of Copenhagen, Denmark. National Lipid Association (NLA) USA, Honorary Lifetime Membership Award 2021.

Chloé D. Villavaso, MN Instructor of Medicine (Cardiology) Tulane University School of Medicine Board Member Preventive Cardiovascular Nurses Association (PCNA)

Chloé Villavaso, MN is a board-certified Adult Health Clinical Nurse Specialist. She earned a Bachelor of Science in Nursing from Tuskegee University and a Master of Nursing from Louisiana State University Health Sciences Center. Chloé is certified in cardiac-vascular nursing and cardiac medicine nursing. She holds a Clinical Faculty position at Tulane University School of Medicine, Heart and Vascular Institute. Her clinical practice focuses on preventive cardiology with an interest in lipid disorders and hypertension management. Chloé’s work extends to numerous community outreach initiatives focusing on eliminating healthcare disparities. Chloé is a member of several professional organizations. She presently serves as the CV team representative for the Louisiana Chapter of the ACC and is a board member, fellow, and chapter vice president of the Preventive Cardiovascular Nurses Association. 2023 FAMILY HEART GLOBAL SUMMIT |

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 a severe form of heterozygous 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 US and Europe within in the medical community and more broadly, she established the FH Foundation, which is now known as the Family Heart Foundation in 2011. 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, 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

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Speaker Bios

Ora Williams Family Heart Advocate Family Heart Foundation Individual living with FH

Ora Williams, is a Family Heart Advocate for Awareness and individual living with familial hypercholesterolemia (FH). She learned she had elevated LDL cholesterol when she was in her 20s, but treatments were limited at that time. Ora knew her family had a long history of heart disease, so she did all she could with what was available to her. Over the years, she lost her father her 44-year-old brother, and tragically her 38-year old son to heart attacks. Ora is dedicated to raising awareness and saving more families.

Shizuya Yamashita, MD, PhD Professor Osaka University Graduate School of Medicine Osaka, Japan

Shizuya Yamashita, MD is President of Rinku General Medical Center, Japan since 2020. He graduated and received his medical degree from the Faculty of Medicine of Osaka University in 1979. He has dedicated his career as a clinician and researcher of internal medicine and cardiovascular medicine at Osaka University Medical School, Osaka University Graduate School of Medicine, and Osaka University Hospital. Professor Yamashitas research interests are lipoprotein metabolism, pathogenesis of atherosclerosis, and clinical practice and molecular biology of metabolic syndrome. His mentors include Professor-Emeritus Yuji Matsuzawa, who proposed the concept of abdominal fat-derived metabolic syndrome. He also spent for several years under Prof. David Hui at Cincinnati University as a visiting scientist. While serving for years as a Professor at Osaka University Hospital and Osaka University Graduate School of Medicine, Professor Yamashita was also appointed as a Director of Rinku General Medical Center in 2015. He is a member at large of International Atherosclerosis Society (IAS) and an executive committee member of Asian-Pacific Society of Atherosclerosis and Vascular Disease (APSAVD). He is the past President of the Japan Atherosclerosis Society and immediate former chair of IAS Asia-Pacific Federation. He is the author of many original manuscripts, case reports, reviews and books in English.

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PARTNER LEVEL

PREMIER LEVEL

SUPPORTING LEVEL

COMMUNITY BENEFACTORS

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