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

By Lisa Salberg July 3, 2025
Summer, greetings to all our big-hearted friends As July approaches, our focus is already on the fall and preparing for some major events, including our annual meeting coming up in October. July will also find us on the west coast in Seattle conducting a regional patient education meeting as part of our big-hearted warrior tour. We have been following the generic drug quality issue in the United States very closely and encourage you to watch the series starting with our Hill briefing in April and following with the additional webinars with our partners at Medshadow and the People's Pharmacy, and of course the ProPublica series of articles. See them all here . We are happy to have a new team member on board - we welcome Pam as our coordinator of both our All Hearts Collaborative and Hearts and Minds project. Over the next few months, you're going to be learning more about these two amazing initiatives and how we are working to provide better services for big hearts regardless of where you live, so we are meeting all of our big-hearted friends where they are. Please stay tuned for updates from these projects coming soon. We are also creating new volunteer opportunities and engagements that we hope will make it easier for you to participate in spreading the message of the importance of diagnosis, the importance of community readiness related to CPR and AED use and, of course, helping patients get to their ultimate diagnosis and getting them on the proper treatment pathways. This July I would like to recognize all of the special birthdays in my family, including HCMA Center of Excellence coordinator, Stacey Titus-brown and my daughter Rebecca Salberg. It's a milestone birthday for Becca - it’s hard to believe I have a 30-year-old child. Wishing you all a happy and healthy summer. Go build some memories!
An official seal in black  & red with white letters that say HCMS Recognized Centers of Excellence
By Sabrina Cuddy July 3, 2025
Getting HCM care at a HCMA Recognized Center of Excellence has a positive impact on patient's outcomes. Find out why in the post by Health Educator Sabrina Cuddy
By Erica Friedman June 26, 2025
Investigative journalists Debbie Cenziper, Megan Rose, Brandon Roberts and Irena Hwang from Pro Publica and NPR have concluded a 14-month long investigation into the quality of generic drugs coming into the United States from overseas. Among the many voices that spoke up for American patients was HCMA Founder and CEO, Lisa Salberg who has felt the effects of low-quality drugs personally. Salberg believes that fixing this problem is something we can do, even in this time, when even health care is highly politicized. Read the key takeaways from ProPublica’s 14-month investigation into the FDA’s oversight of foreign drugmakers in Threat in Your Medicine Cabinet: The FDA’s Gamble on America’s Drugs .
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