Julie Russo • November 29, 2023
Volunteer!

Our volunteers give the HCM community so many things to be grateful for!  They generously share their hearts, experiences and time to help so many and we are truly thankful for each and every one of you! There are so many more who are willing to be a part of our mission to provide support, education, advocacy and care to those with HCM and we are looking forward to engaging you all in the upcoming year in new and continuing projects.  The HCMA would like to wish you all a safe, happy and healthy holiday season and New Year! 

To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE.

Share Your Story (SYS)

HCMA Theme of the Month Stories

One of our HCMA themes for the month of December is “Gratitude” featuring the story of Christine Callans. 

Christine Callans IMG_3835 (1)

“If there’s any advice I can give to newly diagnosed patients, it’s this: get hooked up with the HCMA and an HCMA recognized Center of Excellence. They’ll help you get the most education and best care, and that’ll empower you and give you control over the disease. You’ll realize you’re stronger than you think.” …read more about Christine’s story HERE .  

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!

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 

HCMA Featured Ambassador for December 2023 – Lekeshia Henderson

A little about Lekeshia: A second HCMA Theme during the month of December is “Loss and Support.” Lekeshia Henderson became a volunteer with the HCMA in 2021 after her brother, Michael, suffered cardiac arrest and passed away due to obstructive HCM at the age of 33. Since her brother’s passing, she has been committed to educating herself, her family and others on this genetic heart disease. Lekeshia is also an active member of our HCMA Patient Education Committee and is an HCMA Share Your Story volunteer, sharing the story of the brother she lost to HCM, Michael Sinclair.

Click HERE to learn more about Lekeshia 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

Our legislative volunteers are working hard to help pass resolutions/proclamations and laws in all states to declare the 4 th Wednesday in February of 2024 as “Hypertrophic Cardiomyopathy Awareness Day”. This effort, and our efforts to pass the “Healthy Cardiac Monitoring Act (HCM Act)” into law in every state, takes a large and dedicated team!  If you are interested in helping with these efforts in your state, email julie@4hcm.org to learn how you can get involved!

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 December 2023 Featured Discussion Group Leader:  Greg LeValley

Greg (2)

About Greg:   My name is Greg LeValley.  I am a retired police sergeant and served in the United States Marine Corps.  I was diagnosed with HOCM following a stroke in 2018.  I have a subcutaneous ICD, had an ablation for AFib and a septal myectomy, Cox MAZE procedure and an atrial appendage clip…  Click HERE to learn more about Greg and to view other online discussion group leader bios and themes.  

Greg co-hosts an “All Things Myectomy” online discussion group monthly. Click on our event calendar for exact dates and times to register for Greg’s, or any of our other volunteer led online discussion group.   Our free online discussion groups are open to all.

HCMA Blog

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 .
On a green background, a line drawing of a head that has complicated arrows pointing outwards
By Gordon Fox April 25, 2025
Part 2 of a series on making decisions in HCM. A key reason is that decision making is so difficult is that most decisions involve more than one risk.
Hypertrophic Obsctructive Cardiomyopathy
By Erica Friedman April 22, 2025
Bristol Myers Squibb announces that Camzyos has been approved for Obstructive Hypertrophic Cardiomyopathy in Japan.
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