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

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Susan Blakey

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Billur Dowse

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Gordon A.Fox, PhD

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Amit Kalia, MD

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Robert B. Lorfink

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Martin Maron, MD

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Richard Melia, PHD

HCMA Video Archive

Lynn Perry

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

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Adam Salberg

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Stephen Winters, MD

Emeritus Board Members:

 

STAFF Members & contracted consultants

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Sabrina Cuddy

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Julie Russo

Volunteer Coordinator

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lindA montgomery

client advocate

Stacy - COE Coordinator

Stacey Titus

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Carolyn Willis

Membership Coordinator/Office Manager

Ross Hadley

Ross Hadley

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elena morgan, MS

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Cody Stubben

Social Media Coordinator

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Julie Olsen

Events Coordinator & Fundraising

VOLUNTEERS

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SYDELLE ZINN

Meet online discussion group host, Sydelle Zinn. Sydelle co-hosts a monthly “ICD” Discussion Group. Click on our event calendar for exact dates and times to register for Sydelle’s online discussion groups. Our free online discussion groups are open to all.

Bob

Bob Eldridge

Meet online discussion group host, Bob Eldridge. Bob co-hosts a monthly “General Discussion of Life with HCM” Discussion Group. Click on our event calendar for exact dates and times to register for Bob’s online discussion group.  Our free online discussion groups are open to all.

Salberg

LISA SALBERG

Lisa is HCMA's Founder and CEO.  Lisa holds three online discussion groups monthly to educate and support those who are newly diagnosed, on a transplant pathway or preparing for a myectomy.  Click on our event calendar for exact dates and times to register for one of Lisa's meetings. Our free online discussion groups are open to all.

Gwen

GWEN mAYES

Meet online discussion group host, Gwen Mayes. Gwen hosts a monthly “Emotional Support” Discussion Group. Click on our event calendar for exact dates and times to register for Gwen’s online discussion group. Our free online discussion groups are open to all.

Debra

Debra Rafson

Meet online discussion group host, Debra Rafson. Debra hosts a monthly “Diagnostic Journey” Discussion Group.

Click on our event calendar for exact dates and times to register for Debra’s online discussion groups. Our free online discussion groups are open to all.

Terry

Terence "Terry" Fague

Meet online discussion group host, Terence “Terry” Fague. Terry co-hosts a monthly “General Discussion of Life with HCM” Discussion Group. Click on our event calendar for exact dates and times to register for Terry’s online discussion groups.  Our free online discussion groups are open to all.

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PAUL PERLMAN

Meet online discussion group host, Paul
Perlman. Paul co-hosts a monthly “All Things
Myectomy” Discussion Group. Click on our event calendar for exact dates and times to register for Paul’s online discussion group. Our free online discussion groups are open to all.

Karen

Karen Newstrom

Meet online discussion group host, Karen Newstrom. Karen co-hosts a monthly “ICD”
Discussion Group. Click on our event calendar for exact dates and times to register for Karen’s online discussion group. Our free online discussion groups are open to all.

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greg levalley

Meet online discussion group host, Greg LeValley. Greg co-hosts a monthly “All Things
Myectomy” Online Discussion Group. Click on our event calendar for exact dates and times to register for Greg’s online discussion groups. Our free online discussion groups are open to all.

Lynda

lynda neuhausen

Meet online discussion group host, Lynda Neuhausen. Lynda hosts a monthly “Emotional
Support” Discussion Group. Click on our event calendar for exact dates and times to register for Lynda’s online discussion group.  Our free online discussion groups are open to all.

Trudy

trudy tynan

Meet online discussion group host, Trudy Tynan. Trudy hosts a monthly “HCM Symptoms” Discussion Group. Click on our event calendar for exact dates and times to register for Trudy’s online discussion group.  Our free online discussion groups are open to all.

Sabrina

Sabrina Cuddy

Meet online discussion group host, Sabrina Cuddy. Sabrina is an alternate host for our monthly “Pre-myectomy” education discussion group. This discussion group is for those preparing for a myectomy. Click on our event calendar for exact dates and times to register for our "Pre-myectomy" online education discussion group.  Our free online discussion groups are open to all.