Julie Russo • August 30, 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, contact  julie@4hcm.org  or click  here.

Share Your Story (SYS)

Our HCMA themes for September are “Septal Reduction Options” and “Managing Non-Obstructed HCM” featuring the story of  Maya Warren.  

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 September 2023 – Reinhard (Fritz) Kirchhof

A little about Fritz:  My Name is Reinhard Kirchhof. Everyone calls me Fritz. 72 Years old, retired, born in Frankfurt Germany, immigrated in 1957 with my parents and presently residing in Howell, New Jersey.  Diagnosed 27 years ago for HCM way before we had all these COE’s.  I am widowed from Janet, my wife of 44 years and have 2 sons, one of who is diagnosed with HCM. Additionally, I have 2 grandchildren, one of whom has also been diagnosed. Both are being followed. 

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

Thank you to our volunteer state “Champions” in OH, FL, MA, DE, MD, NY, NV, CT, IL, IN and IA who are getting the word out to state legislators about the  Healthy Cardiac Monitoring Act (HCM Act).  We aim to pass the HCM Act into law in all 50 states. This effort takes a team!  If you are interested in helping any of our champions in the above states or, if you would like to become a champion in another state, 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 September 2023 Featured Discussion Group Leader:  Trudy Tynan

Trudy hosts a monthly “HCM Symptoms” Discussion Group. Click on our event calendar for exact dates and times to register for Trudy’s online discussion group.   Our free online discussion groups are open to all.

About Trudy:  My name is Trudy Tynan and I am retired after 30 years as a reporter with The Associated Press.  Fifteen years ago, I was diagnosed with HCM, at the age of 60, and have undergone and alcohol ablation and later an ablation for a-fib.  I work part-time as a writing tutor at Holyoke Community College in western Massachusetts where I live.  I have a passion for birding, especially seabirds.  Being a discussion group leader affords me the opportunity to help a group that will ultimately encourage and support each other in facing our own individual journeys with HCM.

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

HCMA Volunteer GEM Awards Program

The volunteer hours have been calculated from September 1, 2022 through August 31, 2023 and we would like to say congratulations to our HCMA Volunteer GEM Awards Recipients!  As a big “thank you!”, each GEM Award winner will receive prizes commensurate with the GEM level they have achieved.   

Ruby GEM (for Volunteers donating 80 + hours of their time):

  Emerald GEM (for Volunteers donating 40 – 79 hours of their time):

Gold GEM (for Volunteers donating 20 – 39 hours of their time):

Milla Arabadjian 

Karen L. Newstrom 

Tim Westhaver

Gwen Mayes 

Karen Klimczak 

Lekeshia Henderson

Fabian Metayer 

Leigh Bell 

Marc D. Block

Marion van Sinttruije 

Debra A. Rafson 

Lynda Neuhausen

Greg LeValley 

Trudy Tynan 

Sydelle Zinn

Rosemary Conlon 

Martin Maron 

Adam Salberg

Victoria Wyatt

Silver GEM (for Volunteers donating 10 – 19 hours of their time):

Amy Mann 

Maier Bianchi 

Lauren Donoghue-Cinelli

Ashley Fisher 

Judith Zerden 

Rush W. Roberts

Aaron Troy 

Alison Conklin 

Joey Graham

Elizabeth Wessman 

Breanna Restorick 

Alex de Feria

Debbie Hamilton 

Marsha Rosenberg 

Avonne White

Reinhard Kirchhof 

Susan Shapiro

Bronze GEM (for Volunteers donating 5 – 9 hours of their time):

Vi Tang 

Amy Lenhart 

Lisa Marie Vecchione

Benjamin Lee 

Melissa Holloway Schmidt

Click  GEM  to learn more about our HCMA Volunteer GEM Awards Program and how you can get involved. 

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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