Julie Russo • June 29, 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, click  here.

Share Your Story (SYS)

HCMA Theme of the Month Stories

Our HCMA themes for July are “Center of Excellence Care” and “Vacationing with HCM,” featuring the story of  Elizabeth Wessman.

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

In June, we held orientation workshops for our inaugural team of HCMA Ambassadors. 

Each month, starting August 2023, we will spotlight one (or more!) of our HCMA Ambassadors to help further boost their social media presence. We encourage you to support our ambassadors as they create HCM awareness through the power of social media. A single “share” of an ambassador’s post can really make an impact, helping them create a more extensive following. By sharing their messages, you might help a patient get an accurate diagnosis, access to HCMA-vetted education, and support resources to help them advocate for themselves or their loved ones to receive proper care. 

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

Our fantastic summer interns are researching laws in every state related to Well-Child Examinations, AED, CPR, Pre-Participation Evaluations for athletes, and many more critical data points that are included in our proposed legislation, the Healthy Cardiac Monitoring Act (HCM Act). We will use this information to create a “Report Card” identifying how each state’s existing laws measure up compared to the HCM Act. Utilizing a state “Report Card” as a tool will help legislators understand where their state’s existing laws could improve and if critical components are missing entirely from their state laws. Our goal is to gain their support in closing the gaps necessary to find undiagnosed children and families at risk for heart conditions to avoid tragedy. 

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 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, and UT. If you are a resident in any of these states and want 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 July 2023 Featured Discussion Group Leader:  Debra Rafson

About Debra:  Debra hosts the “Life with HCM” discussion group. She was diagnosed with HCM in 2011 at age 32, after a lifetime of red flags and unexplained symptoms. The following year, she made her way to an HCMA-recognized Center of Excellence for the first time, where she found the care team she needed. In October 2016, she had a septal myectomy, mitral valve adjustment, and ICD implant at Tufts Medical Center in Boston. She currently resides in South Florida. By trade, Debra is an arts administrator, having worked as a theatrical stage manager and managing director. She hopes to transition to more work in writing and helping people with chronic illnesses navigate their medical journeys. Debra is one of the original HCMA Online Discussion Group Leaders, beginning in late 2020, and loves meeting other people with this disease and sharing our stories of “Life with HCM.” 

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