Volunteers greatly contribute to the success of the Hypertrophic Cardiomyopathy Association and our commitment to providing support, education, advocacy, and advancement of research, understanding, and care to those with HCM. The tireless dedication of our volunteers gives us the extra hand needed to make our community’s healthcare experiences positive ones. To learn more about HCMA volunteer opportunities and get involved click here.

Julie Russo, HCMA Volunteer Coordinator

Share Your Story (SYS)
HCMA Theme of the Month Stories One of HCMA’s themes for the month of June is “Exercise and Balancing work/family/HCM while keeping fit (mentally and physically)” featuring the story of Michael Duddy. If you are willing to share your HCM story, please email julie@4hcm.org to set up an interview. Patient stories are essential to help educate and spread awareness about HCM!

HCMA Ambassador Program
We were happy to see so much interest in our HCMA Ambassador Program. With so many people willing to share their HCM experience on various forms of social media, we will reach a much broader audience to spread HCM awareness. All applicants desiring to become HCMA Ambassadors are required to attend our orientation/training workshop. This workshop will educate participants on HCMA’s guidelines for social media posting as an HCMA Ambassador and will provide tips and best practices for optimizing your social media feed. Ambassadors will learn to educate their audience using the HCMA’s repository of accurate information to ensure HCM public awareness is factual and sound.  We have selected a small group of volunteers to participate in our inaugural orientation workshop. They will be encouraged to provide suggestions and feedback to ensure that future workshops are successful. After the program is successfully launched, we will be scheduling additional workshop sessions. 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
HCMA Legislative Intern Corner We have some new faces at the HCMA, our Summer 2023 interns! Each of our interns possesses the education, experience, and enthusiasm needed to succeed in helping us move forward with the introduction and passing of the Healthy Cardiac Monitoring Act in each state.

June 2023 featured intern: ARIANAH BELL

About Arianah: I recently graduated from Drew University with a Bachelor’s degree in Political Science. I also plan to pursue my master’s and Juris doctorate degrees in the future, ultimately focusing on a career in non-profit work. I am an ardent supporter o community-based projects in areas involving: healthcare, reproductive rights, social justice, and education. I applied for this position at HCMA because their mission-driven work deeply aligned with my belief in working to make the world a better place and improve the lives of people. I hope to contribute to HCMA’s mission and work collectively to bring awareness to this fundamental cause.

Healthy Cardiac Monitoring Act (HCM Act)
Thank you, Ohio Representative Sara Carruthers, for agreeing to co-sponsor the HCM Act in your state! Representative Carruthers is currently working on obtaining a bill number and is assisting us with getting additional co-sponsors as the next step to passing the HCM Act into law in Ohio. It only takes a few clicks to get the message about the HCM Act to your state legislators to help save lives. Click here to contact your state representatives and show your support for the HCM Act (please, share this link with others too!!)

To view the HCM Act proposed legislation, click the following link: Health Cardiac Monitoring Act – Hypertrophic Cardiomyopathy Association (4hcm.org)

IMPORTANT NOTE: We are currently looking for volunteers to help us obtain Bill Numbers in the following states: AR, AZ, CA, CO, CN, IL, IN, IA, KY, MA, NV, NY, OH, SD, TX, UT. If you are a resident in any of these states and would like to be involved in a state-specific working group, please email me at julie@4hcm.org.

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 June 2023 Featured Discussion Group Leader: PAUL PERLMAN
Paul hosts the “Pre-myectomy” education group and co-hosts the “All Things Myectomy” discussion group.

About Paul: I am a retired lawyer from Orchard Park, NY. I was diagnosed with HCM in 2013 at the Cleveland Clinic, and received an ICD later that year. After my symptoms became more pronounced over the next three years, I had a surgical myectomy in 2016.

Since retiring in 2017, I have taught at a local college, and served on my college’s Foundation Board. For 25 years before I was diagnosed, I was a general aviation pilot. Being an online discussion group leader is important to me because one of the greatest sources of anxiety for people living with HCM is fear of the unknown. I believe that anxiety can be reduced by sharing our questions and experiences.

To view our event calendar for meeting dates and times, please click the following link: Patient Discussion Groups – Hypertrophic Cardiomyopathy Association (4hcm.org)

HCMA Volunteer GEM Awards Program
Please remember to log your volunteer hours regularly to participate in our Volunteer GEM Awards (VGA) program and be recognized at the end of the year with fun prizes and other forms of appreciation. Click GEM to learn more about our HCMA Volunteer GEM Awards Program and how you can get involved.

If you have any questions about our volunteer projects, you can reach Julie Russo via email at julie@4hcm.org. We truly appreciate the many generous people who donate their time and talent to advocate for and support our community.