Julie Russo • May 9, 2024
Volunteer!

The HCMA has many volunteer opportunities to keep you inspired, fulfilled, and active within the HCM community. Are you interested in learning more about becoming a discussion group leader? Are you interested in making a difference through the legislative process at the state or federal levels? How about helping to spread awareness about HCM by becoming an HCMA Ambassador or even a “Share Your Story” volunteer? Many opportunities exist to help create the world we want to see for HCM patients and their families. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE.

FAQ: What happens after I sign up to volunteer?

We will schedule a Volunteer Intake to get to know you better and discover your strengths and interests.  Next, if you haven’t done so already (or it has been a while), we schedule a Client Intake to learn a little about your HCM patient journey.  This will help us identify projects best suited for your clinical status.  For example, suppose we are looking for obstructive patients who are also symptomatic to participate in a focus group to share their patient experiences. We will know which volunteers meet these criteria by completing a client intake.

Share Your Story (SYS)

HCMA Theme of the Month Stories

The HCMA themes for May 2024 are “Medical Management: What’s New, What’s Old, and What Works” and “Clinical Trials in HCM,” featuring the story of Dennis Passis.

In early 2021, Dennis drove six hours to his first appointment with a COE doctor and his team. At this appointment, his cardiologist mentioned a promising new drug therapy that was going for FDA approval and that he felt Dennis would be a good candidate once it was released.

To read more about Dennis’ HCM journey, click HERE.

Suppose you are a patient (or the parent/guardian of a patient) and are interested in sharing your story about your HCM journey. In that case, we need more patient stories than ever to help educate and spread awareness about HCM.  To sign up to Share Your Story, click HERE.  Under “Projects,” choose “Share My Story Volunteer Group.”

HCMA Ambassador Program 

HCMA Featured Ambassador for May 2024 – Bill Rossi

A little about Bill… “Bill Rossi is an entrepreneur, a veteran business leader in the Chicago area, and a devoted partner and father of twin girls. He is an inspirational LGBTQ+ advocate and a passionate proponent of health and fitness.”  Bill also serves as a HCMA Board of Directors and Legislative Committee member.

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

#4hcm

#BigHeartBigLife 

#hypertrophiccardiomyopathy 

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

On June 18, 2024, at 6 PM ET, we will host our first HCMA Legislative State Champion training session. State Champions will lead a small group of volunteers within their state through the process of passing the Healthy Cardiac Monitoring Act into law. With the support of the HCMA Legislative Committee members and staff, our State Champions will obtain a bill number in their state and support its passage into law.  Volunteers interested in becoming a State Champion should email Julie Russo at julie@4hcm.org.  Include the words “ State Champion ” and the state you live in the subject line of your email. 

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 May 2024 Featured Discussion Group Leader:  Sabrina Cuddy

Sabrina hosts the HCMA Pre-myectomy education/discussion group. Click on our event calendar for exact dates and times to register for Sabrina’s or any other volunteer-led online discussion groups.   Our free online discussion groups are open to all.

About Sabrina:  

“I hold a BA in Psychology from the University of California, Berkeley, and a Master’s of Public Health from San Jose State University. In my other life, I am a mom) and a costumer who sometimes performs onstage, works backstage, and loves performing at the Dickens Christmas Fair in San Francisco.”

Click HERE to learn more about Sabrina and to view other online discussion group leader bios and themes.                 

           

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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