Research

ABOUT the hcma:

The HCMA was founded in 1996 as a 501c3 nonprofit organization. We provide support, advocacy, and education to patients, families, the medical community, and the public about hypertrophic cardiomyopathy while supporting research and fostering the development of treatments.

We support the creation of high volume Center of Excellence care models to ensure all needs of the HCM patient community are met at the highest possible level. We believe in improving global awareness of the risks of this genetic heart disease and ensuring disease understanding, its complete natural history, and treatments are improved until the ultimate eradication of the disease itself.

MEET THE FOUNDEr

Salberg

Lisa Salberg, Founder, and CEO of the HCMA, began on the journey to educate, advocate, and support other patients based on her experience with HCM. This included medical errors that nearly cost her life, the death of her sister - also due to medical errors- and the diagnosis of several family members.

Lisa has published three books on HCM (available on this site) and several peer-reviewed journal articles spoken internationally on HCM. She has appeared in TV and print interviews advocating for patients' rights, research, and raising awareness of HCM.

BOARD OF DIRECTORS

Billur Tenar Dowse

Billur Dowse

unnamed (2)

Gordon A.Fox, PhD

RConlon

Rosemary Conlon

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Amit Kalia, MD

unnamed (4)

Robert B. Lorfink

unnamed (5)

Martin Maron, MD

Richard Melia

Richard Melia, PHD

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Kevin J. O’Connor, Esq.

Isaac Rodriguez-Chavez

Isaac R. Rodriguez-Chavez, PHD, MS, MHS

unnamed (8)

Adam Salberg

Salberg

Lisa Salberg

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Sylvia G. Shubert, MHA

Bill Rossi

Bill RosSi

Mike Lynch

MICHAEL LYNCH MD

Emeritus Board Members:

 

HCMA Video Archive

Lynn Perry

unnamed (9)

Stephen Winters, MD

STAFF Members & contracted consultants

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Sabrina Cuddy

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Julie Russo

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lindA montgomery

client advocate

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Stacey Titus

unnamed (1)

Carolyn Willis

Membership Coordinator/Office Manager

Ross Hadley

Ross Hadley

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elena morgan, MS

unnamed (3)

Cody Stubben

Social Media Coordinator

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Julie Olsen

Events Coordinator & Fundraising

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Olivia Esposito

Graphic Designer

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josh green

video production consultant

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michele Packard-Milam

HCMA International Development

Interns

Nikki Karri

Nikki Karri

Nikki is a second year medical student at The George Washington University School of Medicine and Health Sciences. She has been an intern with the HCMA since 2018 and has patient care experience from working at a nursing home and hospital throughout her high school and undergraduate years. Nikki is EMT certified, and is a TaeKwonDo Black Belt holder and instructor. Her goal is to become a cardiologist and work with underprivileged and underserved communities in remote areas. On the side, she is currently working on research regarding "Neuropsychological Outcomes in Individuals with Congenital Heart Disease (CHD)" as well as "Patterns of ADHD Medication Prescription in Children with Congenital Heart Disease". She is excited to continue working with the HCMA and helping with its legislative advocacy initiative and supporting various other projects.