ross • September 6, 2023
HCMA Project Opportunities

September brings many opportunities for our community to learn and share our experiences with HCM through  trials, focus groups, and survey work .

You have heard us stress the importance of understanding your presentation of HCM and if you are obstructed or non-obstructed.  This is the prime factor in two of our projects.

  • The first is the Study of Mavacamten in Non-Obstructive Hypertrophic Cardiomyopathy (ODYSSEY-HCM)
  • The second is the (MAPLE-HCM) to compare the Efficacy and Safety of Aficamten (CK-3773274) Compared With Metoprolol Succinate in Adults With Symptomatic Hypertrophic Cardiomyopathy and Left Ventricular Outflow Tract Obstruction.
  • Another trial project is for those with a specific HCM-causing gene mutation (MYBPC3) to evaluate the Efficacy, Safety, and Tolerability of MYK-224 in Participants With Symptomatic Obstructive Hypertrophic Cardiomyopathy.  It is one of the first genetic therapy trials in HCM.
  • For our younger HCM community members with the MYBPC3 gene, a study: Natural History Study in Pediatric Patients With MYBPC3 Mutation-associated Cardiomyopathy (MyCLIMB).

We are also building focus groups to look at the KCCQ tool for use in HCM, a focus group of men who have HCM and are symptomatic, and continuing our work with focus groups for genetic therapy.

If you are interested in any of these trial or focus group opportunities, please send me an email with your contact information – my email is  ross@4hcm.org.  If you have not gone through the HCMA Intake process within the last two years, we will be asking you to complete an intake so we can have the best understanding of your current health and HCM presentation.

HCMA Blog

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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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