Julie Russo • March 4, 2024
Volunteer!

Share Your Story (SYS)

Volunteer! 

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 4 th 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. 

#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 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 HER E 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.                 

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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