Julie Russo • January 8, 2024
Volunteer!

We have the plan and the road map and, with the help of our volunteers, we will reach our destination to ensure our mission to provide support, education, advocacy and care to those with HCM.

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

Share Your Story (SYS)

HCMA Theme of the Month Stories

One of our HCMA themes for the month of January is “HCM Yearly Update” featuring the story of Nadia Morgan, who has graciously provided us with an update to her HCM journey. 

“Since my myectomy, my quality of life has improved. With HCM being a fickle thing, I am grateful to be able to share a positive update.”  Read more about Nadia’s HERE .  

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!

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

HCMA Featured Ambassador for January 2024 – Maier Bianchi

A little about Maier: “ I lived the majority of my life so far not knowing I had HCM at all. I just thought I was not fit, or something was wrong with my physical efforts.  Turns out there was a reason…”

Click HERE to learn more about Maier 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

We are going to The Hill!   On February 15 th we are hosting a briefing with federal policymakers in Washington, DC to ask them to add cardiac screening questions to the “Welcome to Medicare” visit and Annual Wellness exam.  We are also looking to highlight the urgent role they play in improving heart-health screening for the underserved and to urge them to help take down barriers to treatment. There has never been a better time to get involved to help find the undiagnosed and improve patient outcomes with these legislative efforts.  Email julie@4hcm.org to learn how you can get involved!

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 January 2024 Featured Discussion Group Leader:  Karen Newstrom

Karen co-hosts an “ICD” online discussion group monthly. Click on our event calendar for exact dates and times to register for Karen’s, or any of our other volunteer led online discussion group.   Our free online discussion groups are open to all.

About Karen:  

Karen was diagnosed with HCM as an adult and received an ICD due to family history.  It has fired appropriately MANY times.  She had a successful myectomy is 2010. Click HERE to learn more about Karen and to view other online discussion group leader bios and themes.                 

HCMA Blog

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