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

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Rosemary Conlon

unnamed

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

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

OUR 2023 Legislative Interns

Nikki Karri

Nikki Karri

I am a senior in the 7-year BA/MD program and the University Honors Program at The George Washington University. I will begin attending GW's Med School this upcoming fall. I have been an intern with the HCMA for over five years and also have patient care experience from working at a nursing home and hospital throughout my high school years. I am EMT, OSHA, First Aid, CPR certified, and a TaeKwonDo Black Belt holder and instructor. My goal is to become a cardiologist and work with underprivileged and underserved communities in remote areas. I am excited to continue working with the HCMA and help with its newest legislative advocacy initiative and any future projects.

Oluwademilade Ogunlade

Oluwademilade Ogunlade

My name is Oluwademilade Ogunlade, but most people call me Olu. I am a Nigerian-American born and raised in Brooklyn, NY. I hold a Bachelor of Arts in Politics, Economics and Law from SUNY Old Westbury. I am a first-year student at the Thurgood Marshall School of Law at Texas Southern University. In my free time, I enjoy writing, cooking, and reading. Advocacy is essential to me because I see value in fighting for change, so I joined HCMA as a Legislative Intern. I am excited to get to work and look forward to igniting change!

Arianah Bell

Arianah bell

Hello, my name is Arianah Bell. I recently graduated from Drew University with a Bachelor's degree in Political Science. I also plan to pursue my master's and Juris doctorate degrees in the future, ultimately focusing on a career in non-profit work. I am an ardent supporter of community-based projects in areas involving: healthcare, reproductive rights, social justice, and education. I applied for this position at HCMA because their mission-driven work deeply aligned with my belief in working to make the world a better place and improve the lives of people. I hope to contribute to HCMA's mission and work collectively to bring awareness to this fundamental cause.