Gordon Fox • June 27, 2023
Patient Education Committee Update

The Patient Education Committee has been busy in recent months! Some of the projects we’re working on or planning include:

Caregiver education :

We will develop guides to help family members, and friends know when patients need help and what steps (emergency room, call the doctor, additional medications) to take if they do.

Decision making:

  • Understanding medical strategies: We will develop materials to help patients understand how doctors make medical decisions. For example, how do they decide to recommend (or not recommend) an ICD implantation or myectomy? And how should patients make their own decisions about these recommendations?
  • Personal decisions that are affected by HCM: Many decisions HCM patients need to make aren’t one-size-fits-all. For example, should I have a child? Should I accept the offer of a job with physical challenges? We will be developing materials aimed at helping think out these decisions by examining their consequences, using decision trees.

There are a number of other things in the hopper. We are discussing ways to use new forums and new approaches to reach people who may have HCM. And in the not-too-distant future, watch for an update on our website! We are always happy to listen to suggestions, whether big (new projects) or small (say, an error on the website).

If there is a resource that you would find helpful, please email  elena@4hcm.org , and she will forward it to the HCMA Patient Education Committee. 

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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