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

Medical Management May

April 30, 2025
Medical Management means using medicines and other non-invasive therapies to relieve symptoms. It's exciting that new treatments for HCM are being studied and that the FDA approved Camzyos in 2022! HCM can cause various symptoms depending on how stiff the heart is, how much scarring (fibrosis) there is, and whether there is obstruction. Some people have no noticeable symptoms. Common symptoms are chest pain/pressure, shortness of breath, lightheadedness, fatigue, palpitations, and brain fog. Syncope (fainting) is dramatic but not as common as the other symptoms. Medications are the first-line treatment for symptoms of HCM. If patients can't take one class of medication, they can try a medication from a different class. Here are some medications used to treat HCM and what they're for: Beta Blockers - make your heart beat slower and relax better. They allow the heart to fill more completely between beats. They can lower blood pressure and relieve symptoms. Calcium Channel Blockers - used to lower blood pressure and slow the heart rate. May reduce symptoms from obstruction in HCM. Myosin Inhibitors - cause the heart to beat with less force. They may reduce obstruction and septal thickness in some patients. Camzyos (mavacamten) is the first of this class of medication. For more information, click HERE . Antiarrhythmics - help to restore normal rhythm in the heart. Blood Thinners - anticoagulants and anti-platelets make it harder for blood to clot. They are prescribed to reduce the risk of stroke. This risk is higher in patients with afib, aflutter, and artificial heart valves. Diuretics , or "water pills," help the kidneys get rid of extra water and salt, reducing swelling in the body. Sodium Channel Blockers - may reduce gradient in obstructive HCM and can treat chest pain. Some also act as antiarrhythmics. Antibiotics - treat or prevent bacterial infections. In HCM, they may be given before dental work to prevent infective endocarditis. To learn more and see the side effects of these medications, click HERE .
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