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

A pregnant woman and partner make a heart with their hands over the baby.

HCM in Pregnancy

By Sabrina Cuddy • June 12, 2025
Pregnancy is a stress on the body even for healthy people. When we have a serious disease, we tend to have even more questions. Health Educator Sabrina Cuddy answers some of the most common questions about HCM and Pregnancy.
Two Caucasian women face a computer monitor. One wears casual clothes, the other a lab coat.

Decisions in HCM: My Risk Estimate was Wrong!

By Gordon Fox • June 9, 2025
In the fifth in a series. Gordon Fox, PhD. looks at the impact of risk estimates in HCM and delves into what it means if the risk estimate seems off.

Lisa's Letter - June Newsletter

By Lisa Salberg • June 9, 2025
June 2025 is upon us and with it comes a great deal of mixed emotions for me and the basis of the founding of HCMA. Origin stories how things began has become quite a topic for Disney movies and marvel comics. But today I'm going to talk about origin stories from the HCMA. The services of the HCMA are based upon lived experience from real patients seeking better care and a chance of a future. Why are bases of intake and navigation calls? They are the starting point for deeper understanding of the condition and access to care. Because on a June day in 1995 my sister, who was 36 years old at the time, was in a situation we could never have predicted. And, at that moment in time, having more knowledge and understanding of the disease could have played important roles in decision-making prior to her cardiac arrest and after. On June 6th, 2025, my sisters held a baby shower for me excited at the prospects of their new niece coming in July. June 12th 1995. My sister would have a cardiac arrest and we would wait for her to wake up. Like any family who has waited for a cardiac arrest victim to wake up or not, nothing could have prepared us for what lay ahead. June 16th, 1995 my sister was pronounced dead and in the early morning hours of June 17th her organs were procured and given to others in hope of saving their lives. On Father's Day a wake was held. The following day was her funeral. I don't think I will ever forget the look on my father's face as he stood next to his daughter's coffin on Father's Day. But I had not considered, on that day, and because my brain couldn't handle it, was that when my father was 18 years old, he stood next to his father's coffin on Father's Day, which also should have been his graduation day. On June 21st, 1953 my grandfather had died from a sudden cardiac arrest at the age of 43. 17 years ago my father also passed on June 7th, 2008. On June 16th, 1990, a few short weeks after my wedding, I thought I had a headache and that was unusual. It was actually a stroke, one of a series of strokes that came after I had received dental work without antibiotics and developed endocarditis and multiple clots formed throughout my body. June always makes me a little nervous…and it reminds me of the fraility of human life. As with any other month of the year, good things in June have happened for our family as well, including my sister and brother-in-law's wedding and her birthday. Happy anniversary, Lynn and Kevin! It was also my mother's birthday and on my mother's birthday in 1976, my life was made better by my new neighbors and lifelong best friend coming into my life. It's hard to believe it's almost 50 years ago. So on this June 2025 this month's message will not be about the places that I've been in the past month or where I'm going next month. It will be to remind you all that this community was built because of one special woman. Her name was Lori and she was my sister and she will always be at the heart of our big-hearted community. I miss you Lori! Today and always. Please take a look at our calendar of events for June and July. We have some great programs coming up including an in-person event in Seattle. I hope to see many of you there. Make some good memories this June Sincerely, Lisa
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