Julie Russo • March 29, 2024
Volunteer!

Share Your Story (SYS)

Volunteer! 

What inspires you?  Sharing your experiences to help educate or encourage others?  Advocating with or for those with whom you share a common goal?  The HCMA has many volunteer opportunities to keep you inspired, fulfilled, and active within the HCM community. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE.

Share Your Story (SYS)

HCMA Theme of the Month Stories

The HCMA themes for April 2024 are “Genetics/Family History” and “Genetic Therapies,” featuring the story of Collin Dolder.

Collin and his wife conceived their son using In vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD). He was born healthy and with no gene mutation.

Collin has been connected with the HCMA for over 20 years.  Starting as a child himself, through having a child of his own. 

To read more about Collin’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, we need patient stories now more 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 April 2024 – Joey Ulery Graham

Joey Ulery Graham

A little about Joey… ”Joey is an HCM advocate and founding member of the steering committee for the HCMA Ambassador Program.  He is a frequent guest on HCMA’s “Tales from the Heart” podcast…” Click HERE to learn more about Joey 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

Ohio Representative Sara P. Carruthers is the Bill Sponsor for HB 356 , the “Healthy Cardiac Monitoring Act” (HCM Act).  The HCMA drafted the HCM Act with components designed to help find undiagnosed HCM patients and patients with other genetic cardiac diseases by adding family heart health history questions to the “Well-child” examinations. There will be a hearing some time in May 2024 at the State House in Columbus, OH, with patients and physicians testifying in support of this important legislation.  If you are an Ohio constituent interested in attending or testifying during this hearing to show your support, contact Julie at julie@4hcm.org for more details.  

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 April 2024 Featured Discussion Group Leader:  Sydelle Zinn

Sydelle co-hosts a monthly “ICD” Discussion Group. Click on our event calendar for exact dates and times to register for Sydelle’s, or any of our other volunteer led online discussion group.   Our free online discussion groups are open to all.

About Sydelle:  

“My name is Sydelle.  I was diagnosed with HCM at 53, after I became lightheaded on a trip to the zoo.  My cardiologist made HCM real to me: no alcohol and no caffeine!…”

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

HCMA Blog

Lisa's Letter - July Newsletter

By Lisa Salberg • July 3, 2025
Summer, greetings to all our big-hearted friends As July approaches, our focus is already on the fall and preparing for some major events, including our annual meeting coming up in October. July will also find us on the west coast in Seattle conducting a regional patient education meeting as part of our big-hearted warrior tour. We have been following the generic drug quality issue in the United States very closely and encourage you to watch the series starting with our Hill briefing in April and following with the additional webinars with our partners at Medshadow and the People's Pharmacy, and of course the ProPublica series of articles. See them all here . We are happy to have a new team member on board - we welcome Pam as our coordinator of both our All Hearts Collaborative and Hearts and Minds project. Over the next few months, you're going to be learning more about these two amazing initiatives and how we are working to provide better services for big hearts regardless of where you live, so we are meeting all of our big-hearted friends where they are. Please stay tuned for updates from these projects coming soon. We are also creating new volunteer opportunities and engagements that we hope will make it easier for you to participate in spreading the message of the importance of diagnosis, the importance of community readiness related to CPR and AED use and, of course, helping patients get to their ultimate diagnosis and getting them on the proper treatment pathways. This July I would like to recognize all of the special birthdays in my family, including HCMA Center of Excellence coordinator, Stacey Titus-brown and my daughter Rebecca Salberg. It's a milestone birthday for Becca - it’s hard to believe I have a 30-year-old child. Wishing you all a happy and healthy summer. Go build some memories!
An official seal in black & red with white letters that say HCMS Recognized Centers of Excellence

July's Topic is COE Care at the HCMA

By Sabrina Cuddy • July 3, 2025
Getting HCM care at a HCMA Recognized Center of Excellence has a positive impact on patient's outcomes. Find out why in the post by Health Educator Sabrina Cuddy

Pro Publica Releases Results of FDA Investigation

By Erica Friedman • June 26, 2025
Investigative journalists Debbie Cenziper, Megan Rose, Brandon Roberts and Irena Hwang from Pro Publica and NPR have concluded a 14-month long investigation into the quality of generic drugs coming into the United States from overseas. Among the many voices that spoke up for American patients was HCMA Founder and CEO, Lisa Salberg who has felt the effects of low-quality drugs personally. Salberg believes that fixing this problem is something we can do, even in this time, when even health care is highly politicized. Read the key takeaways from ProPublica’s 14-month investigation into the FDA’s oversight of foreign drugmakers in Threat in Your Medicine Cabinet: The FDA’s Gamble on America’s Drugs .
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