Linda Montgomery • August 8, 2024
How patients and families can help build an understanding of HCM care, awareness, and advocacy

Clinical Trials:

Innovation has come to HCM through new therapeutic options under investigation. Several trials are open, and several more are planned for later this year or early 2025. 

So, what is a Clinical Trial?

A Clinical trial is a research study that tests a medicine, surgical, or behavioral treatment to see if it works.  With the data from these trials, researchers determine if a new treatment is safe and effective in people.  Research and its results help set the foundation for new research. When a medication is proven safe and effective for a group of patients, it may be considered for study in another population. By volunteering for a trial, we learn more about HCM and how we can live better with it, and maybe someday eradicate it all together.

Many scientific advances come from passionate patients and people like you participating in trials like the ones we have coming up.  

How do I learn more about clinical trial opportunities?

  1. HCMA has made it easy through our online tool   https://bit.ly/46v4d5D – Antidote, a health company platform for recruiting HCM patients that searches HCM trials in a friendly format.  The source of their data is Clinicaltrials.gov. 
  2. clinicaltrials.gov –  is a website listing clinical research studies and information about their results.
  3. Call the office (973) 983-7429 or email Linda@4hcm.org to learn more.

Other types of engagements are available. 

Sponsor-initiated Market Research Engagement: 

The HCMA has several opportunities annually for unique engagements to share the patient and family member’s lived experience to help improve outreach and marketing efforts. Sometimes, these engagements are disease awareness-focused and other times, they may provide “branded” marketing feedback on an approved class of therapeutics. 

So, what is a Sponsor-Initiated Market Research Engagement?

The sponsor-initiated marketing research engagement aims to gather and deeply understand information regarding HCM, its patients, caregivers, and behaviors. They are often interview-style (question-and-answer) phone conversations.   These engagements tend to be smaller in number with a quick turnaround.  For example, we may have 20 positions and must complete the activity in 4 weeks.  Other times, the information may be collected in a survey or a focus group meeting.  Most engagements will compensate you for your time. These opportunities typically include payment for service. To ensure we know you are interested in this type of engagement visit; https://www.surveymonkey.com/r/5YPBF7B

  Advisory board recruitment

So what is an Advisory board and what are their responsibilities?

An advisory board has several key responsibilities contributing to an organization’s success. Their primary role is to provide strategic advice and guidance to the management team. They use their professional or personal expertise and/or industry knowledge to help the organization make informed decisions and develop effective strategies.  

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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