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 Ambassador?
What if every person with HCM had an accurate diagnosis, and access to proper care and felt a little less “alone” by hearing from another patient’s experience?
You can help make this happen by using social media to share your experience living with HCM as an HCMA Ambassador.
Sharing your HCM patient journey can be done in many different ways. Our HCMA Ambassadors use the power of social media to create awareness about HCM.
You can post about your HCM journey from diagnosis to the current day. You can post about your experience finding the proper medication, care provider, or exercise regimen. You can post about your worries and fears and how you overcame them in a way that will inspire others. You can post as little or as often as feels right for you.
Share Your Story (SYS)
HCMA Theme of the Month Stories
The HCMA themes for June 2024 are “Exercise, Balancing Work, Family and HCM While Keeping Fit (Mentally and Physically)” and “Loss, Grief and Support” featuring the story of John Orlando.
With my family around me, at 11:00 PM that evening, I was taken to the operating room. That’s the last thing I remember. When I woke up, it was Tuesday! The first thing I thought was, “I’m alive.”
To read more about John’s HCM journey, click HERE.
If you are a patient (or the parent/guardian of a patient) and you 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 June 2024 – Mary Ann Daniel
A little about Mary Ann… ” After an echocardiogram and wearing a heart monitor, my cardiologist detected HCM. He told me I was at risk of sudden cardiac death, and a week later I had my first cardiac arrest while at the gym.”
Click HERE to learn more about Mary Ann 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
There is still time to register for our June 18, 2024, at 6 PM ET 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 June 2024 Featured Discussion Group Leader: Lynda Neuhausen
Lynda hosts the HCMA a monthly “Emotional Support” discussion group. Click on our event calendar for exact dates and times to register for Lynda’s or any other volunteer-led online discussion groups. Our free online discussion groups are open to all.
About Lynda:
“I was a retail manager for 20 years and started a career as an attorney just before diagnosis. I love spending time with my kids, traveling, and meditation/yoga. Learning to live with this illness has been a journey, and if I can lend and facilitate assistance and support to others on theirs, I think it can bring us all hope and courage.” Click HERE to learn more about Lynda and to view other online discussion group leader bios and themes.
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