Julie Russo • June 4, 2024
Volunteer!

The HCMA has many volunteer opportunities 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 is an HCMA Ambassador?

What if every person with HCM had an accurate diagnosis, and access to proper care and felt a little less “alone” by hearing from another patient’s experience?

You can help make this happen by using social media to share your experience living with HCM as an HCMA Ambassador.

Sharing your HCM patient journey can be done in many different ways.  Our HCMA Ambassadors use the power of social media to create awareness about HCM.

You can post about your HCM journey from diagnosis to the current day. You can post about your experience finding the proper medication, care provider, or exercise regimen. You can post about your worries and fears and how you overcame them in a way that will inspire others. You can post as little or as often as feels right for you.

Share Your Story (SYS)

HCMA Theme of the Month Stories

The HCMA themes for June 2024 are “Exercise, Balancing Work, Family and HCM While Keeping Fit (Mentally and Physically)” and “Loss, Grief and Support” featuring the story of John Orlando.

With my family around me, at 11:00 PM that evening, I was taken to the operating room. That’s the last thing I remember. When I woke up, it was Tuesday! The first thing I thought was, “I’m alive.” 

To read more about John’s HCM journey, click HERE.

If you are a patient (or the parent/guardian of a patient) and you 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 June 2024 – Mary Ann Daniel

A little about Mary Ann… ” After an echocardiogram and wearing a heart monitor, my cardiologist detected HCM. He told me I was at risk of sudden cardiac death, and a week later I had my first cardiac arrest while at the gym.”

Click HERE to learn more about Mary Ann and follow her 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

There is still time to register for our June 18, 2024, at 6 PM ET 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 June 2024 Featured Discussion Group Leader:  Lynda Neuhausen

Lynda hosts the HCMA a monthly “Emotional Support” discussion group. Click on our event calendar for exact dates and times to register for Lynda’s or any other volunteer-led online discussion groups.   Our free online discussion groups are open to all.

About Lynda: 

“I was a retail manager for 20 years and started a career as an attorney just before diagnosis.  I love spending time with my kids, traveling, and meditation/yoga.  Learning to live with this illness has been a journey, and if I can lend and facilitate assistance and support to others on theirs, I think it can bring us all hope and courage.”   Click HERE to learn more about Lynda 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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