The HCMA has many volunteer opportunities to keep you inspired, fulfilled, and active within the HCM community. Are you interested in learning more about becoming a discussion group leader? Are you interested in making a difference through the legislative process at the state or federal levels? How about helping to spread awareness about HCM by becoming an HCMA Ambassador or even a “Share Your Story” volunteer? Many opportunities exist 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 happens after I sign up to volunteer?

We will schedule a Volunteer Intake to get to know you better and discover your strengths and interests.  Next, if you haven’t done so already (or it has been a while), we schedule a Client Intake to learn a little about your HCM patient journey.  This will help us identify projects best suited for your clinical status.  For example, suppose we are looking for obstructive patients who are also symptomatic to participate in a focus group to share their patient experiences. We will know which volunteers meet these criteria by completing a client intake.

Share Your Story (SYS)

HCMA Theme of the Month Stories

The HCMA themes for May 2024 are “Medical Management: What’s New, What’s Old, and What Works” and “Clinical Trials in HCM,” featuring the story of Dennis Passis.

In early 2021, Dennis drove six hours to his first appointment with a COE doctor and his team. At this appointment, his cardiologist mentioned a promising new drug therapy that was going for FDA approval and that he felt Dennis would be a good candidate once it was released.

To read more about Dennis’ HCM journey, click HERE.

Suppose 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 May 2024 – Bill Rossi

A little about Bill… “Bill Rossi is an entrepreneur, a veteran business leader in the Chicago area, and a devoted partner and father of twin girls. He is an inspirational LGBTQ+ advocate and a passionate proponent of health and fitness.”  Bill also serves as a HCMA Board of Directors and Legislative Committee member.

Click HERE to learn more about Bill and follow him 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

On June 18, 2024, at 6 PM ET, we will host our first HCMA Legislative State Champion training session. 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. 

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 May 2024 Featured Discussion Group Leader:  Sabrina Cuddy

Sabrina hosts the HCMA Pre-myectomy education/discussion group. Click on our event calendar for exact dates and times to register for Sabrina’s or any other volunteer-led online discussion groups.   Our free online discussion groups are open to all.

About Sabrina:  

“I hold a BA in Psychology from the University of California, Berkeley, and a Master’s of Public Health from San Jose State University. In my other life, I am a mom) and a costumer who sometimes performs onstage, works backstage, and loves performing at the Dickens Christmas Fair in San Francisco.”

Click HERE to learn more about Sabrina and to view other online discussion group leader bios and themes.                 

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