Sabrina Cuddy • December 23, 2024
The HCMA theme for January is Setting Your Plan For The Year

You must advocate for yourself to get the best care for your HCM. The first step is to have a plan that includes the tests you need and how often to see your cardiologist. To make planning easier, the HCMA offers Navigation Calls. We encourage everyone with HCM to complete our  Intake and Navigation Call  at least once to help you get on track with your care. This is a free service, although paid members may take advantage of extra calls if needed during the year.

We encourage you to see an HCM expert at an  HCMA Recognized Center of Excellence (COE). We are growing this program to give you more options. For those outside the US, we can often help you find an HCM expert, although we have yet to cover every country.

Is cost limiting your ability to fully take advantage of HCMA services? We offer scholarship memberships. You can apply alone or with your application to the Lori Fund, which grants up to $600 per year to cover the cost of traveling to a COE.

For stable HCM patients, here are some general guidelines for regular  testing : 

  • Annual Echocardiogram
  • Annual EKG and/or Ambulatory Monitor
  • Annual cardiologist visit
  • Cardiac MRI every 3-5 years

If your symptoms change, you should contact your cardiology team to discuss whether a medication change or other treatment would help you stay stable. Be flexible in your plan to handle changes in your situation. Remember, each patient is different – some can safely go 2-3 years between visits, while others may need to see their team every six months or less.

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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