Volunteer!

We have the plan and the road map and, with the help of our volunteers, we will reach our destination to ensure our mission to provide support, education, advocacy and care to those with HCM.

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 January is “HCM Yearly Update” featuring the story of Nadia Morgan, who has graciously provided us with an update to her HCM journey. 

“Since my myectomy, my quality of life has improved. With HCM being a fickle thing, I am grateful to be able to share a positive update.”  Read more about Nadia’s 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 January 2024 – Maier Bianchi

A little about Maier: “I lived the majority of my life so far not knowing I had HCM at all. I just thought I was not fit, or something was wrong with my physical efforts.  Turns out there was a reason…”

Click HERE to learn more about Maier and follow him, 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

We are going to The Hill!  On February 15th we are hosting a briefing with federal policymakers in Washington, DC to ask them to add cardiac screening questions to the “Welcome to Medicare” visit and Annual Wellness exam.  We are also looking to highlight the urgent role they play in improving heart-health screening for the underserved and to urge them to help take down barriers to treatment. There has never been a better time to get involved to help find the undiagnosed and improve patient outcomes with these legislative efforts.  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 January 2024 Featured Discussion Group Leader:  Karen Newstrom

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

About Karen:  

Karen was diagnosed with HCM as an adult and received an ICD due to family history.  It has fired appropriately MANY times.  She had a successful myectomy is 2010. Click HERE to learn more about Karen and to view other online discussion group leader bios and themes.