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

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Sixty years ago, Medicaid and Medicare were established when President Lyndon B. Johnson signed the Social Security Amendments into law. The programs were a larger part of Johnson's "War on Poverty" agenda to combat inequality. Sixty years later, Medicaid and Medicare are under attack in ways that we could never have imagined. With the passage of the One Big Beautiful Bill Act (OBBBA), $1 trillion was cut from Medicaid and Medicare―the largest health care cut in U.S. history. As a result of the budget package, more than 15 million people will lose health insurance, hundreds of rural hospitals will close, and approximately 51,000 people will die preventable deaths each year. Congress voted for this harm, and Congress can fix it. We need them to invest in Medicaid and Medicare in order to undo this damage. Click here to send a message to Congress telling them to invest in these critical programs, not cut them. OBBBA is the exact opposite of the "War on Poverty." The bill was passed with brutal cuts to health care to fund more tax handouts for the very wealthy. It took from the poor to give to the rich. The unpopularity of these cuts cannot be overstated. Eighty-three percent of the American public, including three in four Republicans, has a favorable view of Medicaid. Congress must hear from us loud and clear: reverse course, undo the harm to Medicaid and Medicare, and protect health care for more than 71 million people. Join us in sending the message to Congress to invest in these critical programs, don't cut them. 1 The Truth About the One Big Beautiful Bill Act’s Cuts to Medicaid and Medicare 2 Research Memo: Projected Mortality Impacts of the Budget Reconciliation Bill 3 Medicaid keeps getting more popular as Republicans aim to cut it by $800 billion
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