Share Your Story (SYS)


Welcome Spring!  Our volunteers plant seeds of hope and positive change for the HCM community that blossom year-round. Spring is a time to look around and within and reflect on all that has passed and all that is yet to come. Last month, with Heart Month & HCM Awareness Day, we received a significant amount of interest from individuals desiring to become HCMA volunteers. The future is bright!

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

The HCMA themes for the month of March is “Managing Arrythmias” and “Life with Devices” featuring the story of Victoria Collins.

Victoria remained asymptomatic until about six years ago when she had an episode of atrial fibrillation (Afib).  Her Afib resulted in a blood clot forming in her heart.  She received care from an HCMA recognized Center of Excellence (COE), underwent surgery to remove the blood clot and had a Maze procedure to treat her irregular heart rhythm issues. 

To read more about Victoria’s HCM journey, click HERE.If you are a patient (or the parent/guardian of a patient), and are interested in sharing your story about your HCM journey, we need patient stories now more than ever to help educate and spread awareness about HCM.  We especially need stories to support our legislative efforts to pass the HCM Act into law and to pass a proclamation/resolution designating HCM Awareness Day on the 4th Tuesday of February every year in every state. To sign up to Share Your Story, click the following link:  HERE  Under “Projects” choose “Share My Story Volunteer Group”.

HCMA Ambassador Program 

HCMA Featured Ambassador for March 2024 – Breanna “Bre” Restorick

A little about Bre…”I was originally diagnosed with HOCM in 2017 at the age of 29.  Due to the severity of my obstruction, I had a septal myectomy in July of 2017, only a few months after diagnosis…” Click HERE to learn more about Bre and to follow her, and our other HCMA Ambassador volunteers, on social media. 




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 engaging on both Federal and State level legislators to advocate for the HCM community to help find the undiagnosed, especially among underserved communities, with screening initiatives in both “Well-Child” examinations and “Welcome to Medicare” visits.  Other legislative initiatives include access to proper treatment, adequately funded research and supporting the development and approval of safe and effective therapies.

If you would like to get involved, click HERE and under “category”, choose “Advocacy”.

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 March 2024 Featured Discussion Group Leader:  Karen Klimczak

Karen co-hosts a free online “Transplant Pathway” 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:  

“I was diagnosed with HCM at 27 years old, with no family history and years of episodes of passing out/concussions (early 20s) during physical activity.  Having grown up super active: playing tennis, hiking and weightlifting, HCM wasn’t easy to understand or diagnose…”  Click HERE to learn more about Karen and to view other online discussion group leader bios and themes.