Julie Russo • May 9, 2024
Volunteer!

The HCMA has many volunteer opportunities to keep you inspired, fulfilled, and active within the HCM community. Are you interested in learning more about becoming a discussion group leader? Are you interested in making a difference through the legislative process at the state or federal levels? How about helping to spread awareness about HCM by becoming an HCMA Ambassador or even a “Share Your Story” volunteer? Many opportunities exist to help create the world we want to see for HCM patients and their families. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE.

FAQ: What happens after I sign up to volunteer?

We will schedule a Volunteer Intake to get to know you better and discover your strengths and interests.  Next, if you haven’t done so already (or it has been a while), we schedule a Client Intake to learn a little about your HCM patient journey.  This will help us identify projects best suited for your clinical status.  For example, suppose we are looking for obstructive patients who are also symptomatic to participate in a focus group to share their patient experiences. We will know which volunteers meet these criteria by completing a client intake.

Share Your Story (SYS)

HCMA Theme of the Month Stories

The HCMA themes for May 2024 are “Medical Management: What’s New, What’s Old, and What Works” and “Clinical Trials in HCM,” featuring the story of Dennis Passis.

In early 2021, Dennis drove six hours to his first appointment with a COE doctor and his team. At this appointment, his cardiologist mentioned a promising new drug therapy that was going for FDA approval and that he felt Dennis would be a good candidate once it was released.

To read more about Dennis’ HCM journey, click HERE.

Suppose you are a patient (or the parent/guardian of a patient) and are interested in sharing your story about your HCM journey. In that case, we need more patient stories than ever to help educate and spread awareness about HCM.  To sign up to Share Your Story, click HERE.  Under “Projects,” choose “Share My Story Volunteer Group.”

HCMA Ambassador Program 

HCMA Featured Ambassador for May 2024 – Bill Rossi

A little about Bill… “Bill Rossi is an entrepreneur, a veteran business leader in the Chicago area, and a devoted partner and father of twin girls. He is an inspirational LGBTQ+ advocate and a passionate proponent of health and fitness.”  Bill also serves as a HCMA Board of Directors and Legislative Committee member.

Click HERE to learn more about Bill and follow him and our other HCMA Ambassador volunteers on social media. 

#4hcm

#BigHeartBigLife 

#hypertrophiccardiomyopathy 

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

On June 18, 2024, at 6 PM ET, we will host our first HCMA Legislative State Champion training session. State Champions will lead a small group of volunteers within their state through the process of passing the Healthy Cardiac Monitoring Act into law. With the support of the HCMA Legislative Committee members and staff, our State Champions will obtain a bill number in their state and support its passage into law.  Volunteers interested in becoming a State Champion should email Julie Russo at julie@4hcm.org.  Include the words “ State Champion ” and the state you live in the subject line of your email. 

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 May 2024 Featured Discussion Group Leader:  Sabrina Cuddy

Sabrina hosts the HCMA Pre-myectomy education/discussion group. Click on our event calendar for exact dates and times to register for Sabrina’s or any other volunteer-led online discussion groups.   Our free online discussion groups are open to all.

About Sabrina:  

“I hold a BA in Psychology from the University of California, Berkeley, and a Master’s of Public Health from San Jose State University. In my other life, I am a mom) and a costumer who sometimes performs onstage, works backstage, and loves performing at the Dickens Christmas Fair in San Francisco.”

Click HERE to learn more about Sabrina and to view other online discussion group leader bios and themes.                 

           

HCMA Blog

August's Topic is Newly Diagnosed

By Sabrina Cuddy • August 1, 2025
On a background of pink

Call to ACTION! Urge Congress to Invest in Medicaid and Medicare! No Cuts to these crucial programs!

By Julie Russo • July 31, 2025
Sixty years ago, Medicaid and Medicare were established when President Lyndon B. Johnson signed the Social Security Amendments into law. The programs were a larger part of Johnson's "War on Poverty" agenda to combat inequality. Sixty years later, Medicaid and Medicare are under attack in ways that we could never have imagined. With the passage of the One Big Beautiful Bill Act (OBBBA), $1 trillion was cut from Medicaid and Medicare―the largest health care cut in U.S. history. As a result of the budget package, more than 15 million people will lose health insurance, hundreds of rural hospitals will close, and approximately 51,000 people will die preventable deaths each year. Congress voted for this harm, and Congress can fix it. We need them to invest in Medicaid and Medicare in order to undo this damage. Click here to send a message to Congress telling them to invest in these critical programs, not cut them. OBBBA is the exact opposite of the "War on Poverty." The bill was passed with brutal cuts to health care to fund more tax handouts for the very wealthy. It took from the poor to give to the rich. The unpopularity of these cuts cannot be overstated. Eighty-three percent of the American public, including three in four Republicans, has a favorable view of Medicaid. Congress must hear from us loud and clear: reverse course, undo the harm to Medicaid and Medicare, and protect health care for more than 71 million people. Join us in sending the message to Congress to invest in these critical programs, don't cut them. 1 The Truth About the One Big Beautiful Bill Act’s Cuts to Medicaid and Medicare 2 Research Memo: Projected Mortality Impacts of the Budget Reconciliation Bill 3 Medicaid keeps getting more popular as Republicans aim to cut it by $800 billion

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!
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