Lisa • March 9, 2023
In Her Own Words: Lisa Salberg advocates with a heart.

Between 1 in 250 to 1 in 500 people are impacted by Hypertrophic Cardiomyopathy, a genetic heart condition that took the life of Lisa Salberg’s sister. Lisa, her daughter and many other family members live with this condition. That’s why she’s dedicated her life to advocacy.

“Heart disease has always been a heavy weight on my shoulders, but I never anticipated the role I would play in supporting others who were also affected. As the founder of the Hypertrophic Cardiomyopathy Association (HCMA), I’ve dedicated my life to spreading awareness of hypertrophic cardiomyopathy (HCM), the heart muscle disease that causes the muscle to become thick and unable to pump blood normally. It’s the most common of all genetic heart conditions, but throughout my life, I saw the lack of education and resources surrounding the disease firsthand. That’s why I knew I needed to make a change.

At age 12, I was diagnosed with hypertrophic cardiomyopathy when little to no information was available surrounding this disease. Several of my family members struggled with heart-related issues; others were also diagnosed with HCM. With constant hospital visits, medical treatments, and a stroke at 21, I struggled to find control over this disease for the majority of my life.

My life took a turn in 1995 when my sister, Lori Anne Flanigan-Munson, passed away at 36 from medical errors and complications related to HCM and overall mismanagement of the disease. Her death was something that should have never happened and could have been prevented with the right guidance and information.

Because of the untimely passing of my sister, I decided to take control of my condition and help others in similar positions. After the losses I experienced, I felt called to do something so others wouldn’t have to go through the same. I decided to start a website that could provide information to others with much-needed information, support and advocacy.

HCMA Blog

Lisa's Letter - July Newsletter

By Lisa Salberg • July 3, 2025
Summer, greetings to all our big-hearted friends As July approaches, our focus is already on the fall and preparing for some major events, including our annual meeting coming up in October. July will also find us on the west coast in Seattle conducting a regional patient education meeting as part of our big-hearted warrior tour. We have been following the generic drug quality issue in the United States very closely and encourage you to watch the series starting with our Hill briefing in April and following with the additional webinars with our partners at Medshadow and the People's Pharmacy, and of course the ProPublica series of articles. See them all here . We are happy to have a new team member on board - we welcome Pam as our coordinator of both our All Hearts Collaborative and Hearts and Minds project. Over the next few months, you're going to be learning more about these two amazing initiatives and how we are working to provide better services for big hearts regardless of where you live, so we are meeting all of our big-hearted friends where they are. Please stay tuned for updates from these projects coming soon. We are also creating new volunteer opportunities and engagements that we hope will make it easier for you to participate in spreading the message of the importance of diagnosis, the importance of community readiness related to CPR and AED use and, of course, helping patients get to their ultimate diagnosis and getting them on the proper treatment pathways. This July I would like to recognize all of the special birthdays in my family, including HCMA Center of Excellence coordinator, Stacey Titus-brown and my daughter Rebecca Salberg. It's a milestone birthday for Becca - it’s hard to believe I have a 30-year-old child. Wishing you all a happy and healthy summer. Go build some memories!
An official seal in black & red with white letters that say HCMS Recognized Centers of Excellence

July's Topic is COE Care at the HCMA

By Sabrina Cuddy • July 3, 2025
Getting HCM care at a HCMA Recognized Center of Excellence has a positive impact on patient's outcomes. Find out why in the post by Health Educator Sabrina Cuddy

Pro Publica Releases Results of FDA Investigation

By Erica Friedman • June 26, 2025
Investigative journalists Debbie Cenziper, Megan Rose, Brandon Roberts and Irena Hwang from Pro Publica and NPR have concluded a 14-month long investigation into the quality of generic drugs coming into the United States from overseas. Among the many voices that spoke up for American patients was HCMA Founder and CEO, Lisa Salberg who has felt the effects of low-quality drugs personally. Salberg believes that fixing this problem is something we can do, even in this time, when even health care is highly politicized. Read the key takeaways from ProPublica’s 14-month investigation into the FDA’s oversight of foreign drugmakers in Threat in Your Medicine Cabinet: The FDA’s Gamble on America’s Drugs .
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