Julie Russo • May 31, 2023
Volunteer!


Volunteers greatly 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 ones. To learn more about HCMA volunteer opportunities and get involved click here.

Julie Russo, HCMA Volunteer Coordinator

Share Your Story (SYS)
HCMA Theme of the Month Stories One of HCMA’s themes for the month of June is “Exercise and Balancing work/family/HCM while keeping fit (mentally and physically)” featuring the story of Michael Duddy. If you are willing to share your HCM story, please email  julie@4hcm.org  to set up an interview. Patient stories are essential to help educate and spread awareness about HCM!

HCMA Ambassador Program
We were happy to see so much interest in our HCMA Ambassador Program. With so many people willing to share their HCM experience on various forms of social media, we will reach a much broader audience to spread HCM awareness. All applicants desiring to become HCMA Ambassadors are required to attend our orientation/training workshop. This workshop will educate participants on HCMA’s guidelines for social media posting as an HCMA Ambassador and will provide tips and best practices for optimizing your social media feed. Ambassadors will learn to educate their audience using the HCMA’s repository of accurate information to ensure HCM public awareness is factual and sound.  We have selected a small group of volunteers to participate in our inaugural orientation workshop. They will be encouraged to provide suggestions and feedback to ensure that future workshops are successful. After the program is successfully launched, we will be scheduling additional workshop sessions. 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
HCMA Legislative Intern Corner We have some new faces at the HCMA, our Summer 2023 interns! Each of our interns possesses the education, experience, and enthusiasm needed to succeed in helping us move forward with the introduction and passing of the Healthy Cardiac Monitoring Act in each state.

June 2023 featured intern: ARIANAH BELL

About Arianah: I recently graduated from Drew University with a Bachelor’s degree in Political Science. I also plan to pursue my master’s and Juris doctorate degrees in the future, ultimately focusing on a career in non-profit work. I am an ardent supporter o community-based projects in areas involving: healthcare, reproductive rights, social justice, and education. I applied for this position at HCMA because their mission-driven work deeply aligned with my belief in working to make the world a better place and improve the lives of people. I hope to contribute to HCMA’s mission and work collectively to bring awareness to this fundamental cause.

Healthy Cardiac Monitoring Act (HCM Act)
Thank you, Ohio Representative Sara Carruthers, for agreeing to co-sponsor the HCM Act in your state! Representative Carruthers is currently working on obtaining a bill number and is assisting us with getting additional co-sponsors as the next step to passing the HCM Act into law in Ohio. 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 currently 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, UT. If you are a resident in any of these states and would like 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 June 2023 Featured Discussion Group Leader: PAUL PERLMAN
Paul hosts the “Pre-myectomy” education group and co-hosts the “All Things Myectomy” discussion group.

About Paul: I am a retired lawyer from Orchard Park, NY. I was diagnosed with HCM in 2013 at the Cleveland Clinic, and received an ICD later that year. After my symptoms became more pronounced over the next three years, I had a surgical myectomy in 2016.

Since retiring in 2017, I have taught at a local college, and served on my college’s Foundation Board. For 25 years before I was diagnosed, I was a general aviation pilot. Being an online discussion group leader is important to me because one of the greatest sources of anxiety for people living with HCM is fear of the unknown. I believe that anxiety can be reduced by sharing our questions and experiences.

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

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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