Linda Montgomery • February 26, 2024
HCMAs first Hill Day

Hill Day, February 15th, 2024

This year’s Hill Day Event during Heart Month was a success by all measures. It was our first year participating, and while it was a success, we’ve already come up with ideas on how to make it even better next year.  This is what the HCM Community does – make something good and make it better!

Hill Day is an event that takes place on Capitol Hill in Washington, D.C.  It was a day for us to generate awareness and education about HCM for our lawmakers and elected officials.  

Hill Day by the numbers

29 Volunteers joined us in Washington D.C.

4 Staff members : Lisa, Elena, Stacey, and Linda.  Let’s not forget our staffers who stayed at home to be able to fix, set, re-route, etc things for us while we were there.  A special shout-out to Julie, Olivia, Ross, Sabrina, and Kim.

4 Board members : Rosemary Conlon, Billur Dowse, Kevin O’Connor, and Bill Rossi.

68 People  attended the briefing.

3 COE clinicians:  spoke on our behalf – Dr. Martin Maron, Ms. Deatrah Debose, NP, and Dr. Steve Ommen.

3 Amazing individuals  spoke on how HCM has touched their lives.  Jared Butler  from the NBA’s Washington Wizards spoke about his HCM journey while continuing to play basketball at the professional level.   Amy Blair , with her bittersweet story of the loss of her daughter Jillian.  A tragic story of loss, yet our hearts are so grateful to Amy for sharing Jillian’s story.  Amy’s motivation is to prevent anyone else from experiencing the loss she has.    Marsha Rosenberg , 81 years young shared her story about how, with good care, you can live a healthy, long, fulfilled life.  She is a great example of this; she is an extraordinary example of how to look and feel decades younger than you are!

15 Meetings conducted  with legislators and/or their staff.

HCMA Blog

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!
By Sabrina Cuddy July 3, 2025
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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