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.
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