Julie Russo • February 5, 2024
Volunteer!

Share Your Story (SYS)

Happy Heart Month!  February is going to be a busy month for the HCMA but, with the help of our volunteers, it truly makes the load a lot lighter!

To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE.

HCMA Theme of the Month Stories

The HCMA themes for the month of February is “HCM Awareness” and “Sharing Stories of Life with HCM” featuring the story of Lisa Salberg, HCMA Founder and CEO.

“I was 12 years old, and standing in the school nurse’s office waiting to get my heart listened to.  The doctor, a little old man, sat on a round stool looking bored. As the stethoscope rose to my chest – suddenly he looked interested, maybe even a little panicked, he called over the nurse to take a listen.  I had a pretty good idea of what was happening, and it was frightening but, kids were watching and I had to stay cool…”

To read more about Lisa’s HCM journey, click HERE.

Heart Month HCM Heroes of the Day : During February 2024 (American Heart Month), we will be featuring one HCM Hero patient story each day while using social media to ensure their story reaches a broader audience. Many thanks to our Share Your Story volunteers who worked with us to present the story of their HCM journey during the month of February to help spread awareness about HCM.

If you are a patient (or the parent/guardian of a patient) and are interested in sharing your story about your HCM journey, we need patient stories now more than ever to help educate and spread awareness about HCM.  We especially need stories to support our legislative efforts to pass the HCM Act into law and to pass a proclamation/resolution designating HCM Awareness Day on the 4 th Tuesday of February every year in every state. To sign up to Share Your Story, click the following link:  https://bit.ly/3DNBKJI   Under “Projects” choose “Share My Story Volunteer Group”.

HCMA Ambassador Program 

HCMA Featured Ambassador for February 2024 – Susan Shapiro

A little about Susan:  After losing another family member to HCM, Susan used what she had learned from the HCMA as she set out to educate her family members about risk assessment, genetic testing, and COEs in hopes of preventing another tragedy… Click HERE to learn more about Susan and follow her, 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

We are ready for “The Hill” with m any thanks to those who volunteered to join us as we embark on our first visit to the Capitol to begin working with Members of Congress to address the needs of the HCM community. 

On Wednesday, February 14th (Valentine’s Day!), our volunteers will be meeting us in Washington, DC at 7 AM (you KNOW what they say about the “early bird”!).  We will assign teams of 3 to 4 to work together attending pre-scheduled meetings with Members of Congress, and/or their staff.  Our goal is to share patient stories and drive home the message of the importance of finding the undiagnosed, the need to adequately fund research, and the importance of breaking down the barriers to proper treatment. In between meetings, we will be handing out Valentine’s Day candies and printed invitations to members of targeted committees, inviting them to attend an HCMA-hosted legislative briefing & luncheon on February 15th. 

On Thursday, February 15th, we will start the day at 7:30 AM with more meetings with Members of Congress and/or their staff until 12 Noon where we will convene at the Rayburn House in Washington, DC for an HCMA-hosted Bipartisan Congressional Lunch Briefing. This briefing brings patients, parents, clinicians, and thought leaders together to discuss issues of great importance to our community with Members of Congress:

• Why screening for these heart disorders must become the norm – especially among underserved populations and those entering Medicare.

• Why access to proper treatment can save lives and reduce healthcare costs.

• Why research must be adequately funded.

• Why policymakers should support the development and approval of safe and effective therapies- and access

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 February 2024 Featured Discussion Group Leader:  Gwen Mayes

Gwen hosts a free online “Emotional Support” discussion group monthly. Click on our event calendar for exact dates and times to register for Gwen’s, or any of our other volunteer led online discussion group.   Our free online discussion groups are open to all.

About Gwen:   “As a discussion group leader, I focus on self-awareness and stress management.  During my career, I was a physician assistant, lawyer, and spent 30 years as a health policy leader in Washington, DC…” Click HERE to learn more about Gwen 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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