Julie Russo • June 29, 2023
Volunteer!

Volunteers significantly contribute to the success of the Hypertrophic Cardiomyopathy Association and our commitment to providing support, education, advocacy, and advancement of research, understanding, and care to those with HCM. The tireless dedication of our volunteers gives us the extra hand needed to make our community’s healthcare experiences positive. To learn more about HCMA volunteer opportunities and get involved, click  here.

Share Your Story (SYS)

HCMA Theme of the Month Stories

Our HCMA themes for July are “Center of Excellence Care” and “Vacationing with HCM,” featuring the story of  Elizabeth Wessman.

If you want to share your HCM story, please email  julie@4hcm.org  to schedule an interview. Patient stories are essential to help educate and spread awareness about HCM!

HCMA Ambassador Program

In June, we held orientation workshops for our inaugural team of HCMA Ambassadors. 

Each month, starting August 2023, we will spotlight one (or more!) of our HCMA Ambassadors to help further boost their social media presence. We encourage you to support our ambassadors as they create HCM awareness through the power of social media. A single “share” of an ambassador’s post can really make an impact, helping them create a more extensive following. By sharing their messages, you might help a patient get an accurate diagnosis, access to HCMA-vetted education, and support resources to help them advocate for themselves or their loved ones to receive proper care. 

If you would like to share your HCM experience via social media as an HCMA Ambassador, click  here  to apply for future workshops. 

Legislative Advocacy

Our fantastic summer interns are researching laws in every state related to Well-Child Examinations, AED, CPR, Pre-Participation Evaluations for athletes, and many more critical data points that are included in our proposed legislation, the Healthy Cardiac Monitoring Act (HCM Act). We will use this information to create a “Report Card” identifying how each state’s existing laws measure up compared to the HCM Act. Utilizing a state “Report Card” as a tool will help legislators understand where their state’s existing laws could improve and if critical components are missing entirely from their state laws. Our goal is to gain their support in closing the gaps necessary to find undiagnosed children and families at risk for heart conditions to avoid tragedy. 

It only takes a few clicks to get the message about the HCM Act to your state legislators to help save lives. Click  here  to contact your state representatives and show your support for the HCM Act   (please, share this link with others too!!) 

To view the HCM Act proposed legislation, click the following link:   Health Cardiac Monitoring Act – Hypertrophic Cardiomyopathy Association (4hcm.org)    

IMPORTANT NOTE: We are looking for volunteers to help us obtain Bill Numbers in the following states:   AR, AZ, CA, CO, CN, IL, IN, IA, KY, MA, NV, NY, OH, SD, TX, and UT. If you are a resident in any of these states and want to be involved in a state-specific working group, please email me at  julie@4hcm.org .  

Free Online Patient Discussion Groups   

Our online discussion group meetings are recurring, but you must register for each meeting date. Our meeting dates, times, and topics are updated regularly, so check our event calendar regularly to join a meeting (or more than one) best suited for you!  

HCMA’s July 2023 Featured Discussion Group Leader:  Debra Rafson

About Debra:  Debra hosts the “Life with HCM” discussion group. She was diagnosed with HCM in 2011 at age 32, after a lifetime of red flags and unexplained symptoms. The following year, she made her way to an HCMA-recognized Center of Excellence for the first time, where she found the care team she needed. In October 2016, she had a septal myectomy, mitral valve adjustment, and ICD implant at Tufts Medical Center in Boston. She currently resides in South Florida. By trade, Debra is an arts administrator, having worked as a theatrical stage manager and managing director. She hopes to transition to more work in writing and helping people with chronic illnesses navigate their medical journeys. Debra is one of the original HCMA Online Discussion Group Leaders, beginning in late 2020, and loves meeting other people with this disease and sharing our stories of “Life with HCM.” 

To view our event calendar for meeting dates and times, please click the following link:  Patient Discussion Groups – Hypertrophic Cardiomyopathy Association (4hcm.org)

HCMA Volunteer GEM Awards Program

Please remember to log your volunteer hours regularly to participate in our Volunteer GEM Awards (VGA) program and be recognized at the end of the year with fun prizes and other forms of appreciation. Click  GEM  to learn more about our HCMA Volunteer GEM Awards Program and how you can get involved. 

If you have any questions about our volunteer projects, you can reach Julie Russo via email at  julie@4hcm.org. We truly appreciate the many generous people who donate their time and talent to advocate for and support our community. 

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!

July's Topic is COE Care at the HCMA

By Sabrina Cuddy • July 3, 2025

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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