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

On a green background, a line drawing of a head that has complicated arrows pointing outwards

Decisions in HCM: Why are they so hard?

By Gordon Fox • April 25, 2025
Part 2 of a series on making decisions in HCM. A key reason is that decision making is so difficult is that most decisions involve more than one risk.
Hypertrophic Obsctructive Cardiomyopathy

Camzyos® receives manufacturing and marketing approval for HOCM in Japan

By Erica Friedman • April 22, 2025
Bristol Myers Squibb announces that Camzyos has been approved for Obstructive Hypertrophic Cardiomyopathy in Japan.

Lisas Letter - April Newsletter

April 15, 2025
It is hard to believe the first quarter of 2025 is in the history books. In the space of hypertrophic cardiomyopathy and thick heart muscle disorders, the distance between the promise and the delivery of a reality freed from burden of disease is closer than it has ever been, not only in the United States but throughout the world. Unfortunately, we are navigating through some challenging health policy times, which will impact a large percentage of those with the diseases we seek to serve. While we navigate these challenging waters together, we remain committed to ensuring safe, accessible, affordable healthcare while ensuring the rights of those with disabilities are maintained. Last month, I attended two large conferences - one held in Stockholm, Sweden the other Chicago, Illinois. The research communities worldwide are holding their breath, waiting to see how we will move forward, even as we continue to develop new therapies, treatments and, even potentially, cures. It has never been more important to keep research moving, as we are so close to so many amazing improvements in our ability to care for those with thick heart muscle disorders, including HCM in all its forms, Amyloidosis, Fabry’s disease, Danon disease, and RASopathies. There was amazing science presented at the American College of Cardiology, where we warmly welcomed new president, Dr. Christopher Kramer, the original director of the hypertrophic cardiomyopathy center at University of Virginia. We look forward to his leadership and wish him well in his challenging tasks ahead. Later this month we will be in Orlando, Florida - please register and join us for this wonderful Bighearted warrior tour in person with our friends at AdventHealth and the incomparable Dr. Marcos Hazday. I even understand that there's some carpooling being organized from the Tampa area. If you're interested, reach out to the office and we will connect you. Maybe, the most impactful thing that will happen in the month of April is that we will conduct our second visit to Capitol Hill. Our lead topic this year is something you have heard us talk about at many prior meetings of the HCMA and podcasts; the generic drug quality issue. We are proud to be partnering with David Light, Co-founder and President of Valisure, and retired Colonel Vic Suarez, to ask House and Senate members to support the inspection of all generic drugs purchased by the Department of Defense and the Veterans Administration and make results of these inspections open for public use. Secondly, we are seeking rational oversight of health insurance companies’ abuse of prior authorizations and step therapy requirements. These issues cost an estimated 1.3 billion dollars a year and provide nothing to keep a patient safer or a physician's office running more efficiently. Common sense tells us to not waste money where there is no return. Additionally, prior authorizations and step therapies can keep patients sicker longer, ultimately costing the healthcare system more money. Our briefing will educate Representatives to act in an informed manner when moving policies that impact us all. You can watch the video of our briefing from Wednesday, April 9th on Vimeo: https://vimeo.com/event/5043266 If you wish to get involved or more informed on any of the issues above, I encourage you to visit the website, 4hcm.org , or reach out to the office and the staff will be happy to assist you. On the day before I head out to Washington DC, I will leave you with this one thought - we have come a really long way in our understanding of HCM over the past 60 years. We have increased the lifespan of those with HCM, through collaborative research and implementation of best practices in an organized fashion throughout this country. We have worked so hard to end suffering for so many, and we are succeeding in our shared goal to outsmart hypertrophic cardiomyopathy and other thick heart muscle disorders. It is important to continue the research into all aspects of these diseases, including the biological, the clinical, and burden of disease measurements. System improvements, positive impact of timely diagnosis and treatment, and the value to society of all of these big hearts being here, will help keep their families whole. So we're off to DC to try to educate others about what it really means to live in our ecosystem. Best wishes, Lisa
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