Volunteers significantly 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. To learn more about HCMA volunteer opportunities and get involved, click here.

Share Your Story (SYS)

HCMA Theme of the Month Stories

Our HCMA themes for July are “Center of Excellence Care” and “Vacationing with HCM,” featuring the story of Elizabeth Wessman.

If you want to share your HCM story, please email julie@4hcm.org to schedule an interview. Patient stories are essential to help educate and spread awareness about HCM!

HCMA Ambassador Program

In June, we held orientation workshops for our inaugural team of HCMA Ambassadors. 

Each month, starting August 2023, we will spotlight one (or more!) of our HCMA Ambassadors to help further boost their social media presence. We encourage you to support our ambassadors as they create HCM awareness through the power of social media. A single “share” of an ambassador’s post can really make an impact, helping them create a more extensive following. By sharing their messages, you might help a patient get an accurate diagnosis, access to HCMA-vetted education, and support resources to help them advocate for themselves or their loved ones to receive proper care. 

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 fantastic summer interns are researching laws in every state related to Well-Child Examinations, AED, CPR, Pre-Participation Evaluations for athletes, and many more critical data points that are included in our proposed legislation, the Healthy Cardiac Monitoring Act (HCM Act). We will use this information to create a “Report Card” identifying how each state’s existing laws measure up compared to the HCM Act. Utilizing a state “Report Card” as a tool will help legislators understand where their state’s existing laws could improve and if critical components are missing entirely from their state laws. Our goal is to gain their support in closing the gaps necessary to find undiagnosed children and families at risk for heart conditions to avoid tragedy. 

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 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, and UT. If you are a resident in any of these states and want 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 July 2023 Featured Discussion Group Leader:  Debra Rafson

Deb 11-2019

About Debra: Debra hosts the “Life with HCM” discussion group. She was diagnosed with HCM in 2011 at age 32, after a lifetime of red flags and unexplained symptoms. The following year, she made her way to an HCMA-recognized Center of Excellence for the first time, where she found the care team she needed. In October 2016, she had a septal myectomy, mitral valve adjustment, and ICD implant at Tufts Medical Center in Boston. She currently resides in South Florida. By trade, Debra is an arts administrator, having worked as a theatrical stage manager and managing director. She hopes to transition to more work in writing and helping people with chronic illnesses navigate their medical journeys. Debra is one of the original HCMA Online Discussion Group Leaders, beginning in late 2020, and loves meeting other people with this disease and sharing our stories of “Life with HCM.” 

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.