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

Two Caucasian women face a computer monitor. One wears casual clothes, the other a lab coat.
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.
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
A mixed race family in denim walks down a road, the child on a tricycle
By Sabrina Cuddy June 4, 2025
Experts agree that exercise is healthy for people with HCM. Depending on symptoms, most people with HCM can safely do at least light exercise. Learn more in this month's blog pog post by Health Educator Sabrina Cuddy.
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