Julie Russo • June 26, 2024
Volunteer!

The HCMA has many volunteer opportunities to help create the world we want to see for HCM patients and their families. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE.

FAQ: What is an HCMA Legislative State Champion?

An amazing group of volunteers with A SHARED COMMITMENT TO FIND the undiagnosed in their state!

We seek to improve cardiac screening in the “Well Child” examination for all children 19 and younger through:

✔Improved identification of cardiac disorders in the young.

✔Improved student-athlete pre-participation physicals.

✔Professional development for healthcare providers.

Our goal: To help you take the Healthy Cardiac Monitoring Act (HCM Act) from aspiration to legislation to law in your state.

If you are interested in becoming a Legislative State Champion, please email Julie Russo and julie@4hcm.org.

Share Your Story (SYS)

HCMA Theme of the Month Stories

The HCMA themes for July 2024 are “COE Care” and “Vacationing with HCM” featuring the story of Amy Lenhart.

I was encouraged to find a Center of Excellence and found it helpful talking to those who really understood my challenges and took the time and compassion to listen to me – this helped me emotionally, and it helped alleviate my fears. I have the opportunity to live my life normally. There are scary things about HCM, but I now have hope, and I will be forever grateful for that.

To read more about Amy’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. In that case, we need more patient stories than ever to help educate and spread awareness about HCM.  To sign up to Share Your Story, click HERE.  Under “Projects,” choose “Share My Story Volunteer Group.”

HCMA Ambassador Program 

HCMA Featured Ambassador for July 2024 – Karen Klimczak

A little about Karen… “I was diagnosed with HCM at 27 years old, with no family history and years 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 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

In June we hosted our Legislative State Champion training session with 21 states represented!  Our State Champions will lead a small group of volunteers within their state through the process of passing the Healthy Cardiac Monitoring Act into law. With the support of the HCMA Legislative Committee members and staff, our State Champions will obtain a bill number in their state and support its passage into law.  Volunteers interested in becoming a State Champion should email Julie Russo at julie@4hcm.org.  Include the words “ State Champion ” and the state you live in the subject line of your email. 

Ohio HCM Act Update:

  • Bill Sponsored by Ohio Representative Sara Carruthers
  • Co-sponsors: Reps. Forhan, Denson, Pavliga, Schmidt
  • Bill Number Assigned:  HB 356
  • Introduced on 12/6/23
  • Referred to Ohio House Public Health Committee on 12/12/23
  • Proponent Hearing for HB 356 held on June 18 th
    • Testimony given in-person by Lisa Salberg, Dr. Peter Aziz, Dr. Milind Desai, and patient testimony by Judith Ried.
    • A recording of this proponent hearing can be viewed HERE
  • Next steps: To our Ohio constituents, get ready to “make some noise” to show your support of HB 356. Stay tuned!  

Michigan HCM Act Update:

  • Sponsored by Michigan Rep. Amos O’Neal
  • First draft of the bill received from Michigan’s Legislative Service Bureau (LSB) and commented on by the HCMA Legislative Committee.
  • Additional language needs to be reviewed before re-submitting to LSB (end of Summer break)

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 July 2024 Featured Discussion Group Leader:  Paul Perlman

Paul co-hosts the HCMA monthly “All Things Myectomy” discussion group. He also hosts our “Pre-Myectomy education session for patients scheduled for myectomy surgery. Click on our event calendar for exact dates and times to register for Paul’s groups or any other volunteer-led online discussion groups.   Our free online discussion groups are open to all.

About Paul: 

Paul is a retired lawyer from Orchard Park, NY.  He was diagnosed with HCM in 2013 at Cleveland Clinic and received an ICD later that year.  After his symptoms became more pronounced, Paul had a surgical myectomy in 2016.Click HERE to learn more about Paul and to view other online discussion group leader bios and themes.  

HCMA Blog

A pregnant woman and partner make a heart with their hands over the baby.
By Sabrina Cuddy June 12, 2025
Pregnancy is a stress on the body even for healthy people. When we have a serious disease, we tend to have even more questions. Health Educator Sabrina Cuddy answers some of the most common questions about HCM and Pregnancy.
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
More Posts