June 2023 Pulse Newsletter

Dear Bighearted Friends,

I hope this newsletter finds you well and ready to embark upon some summer rest and relaxation. It has been a busy month behind, and of course, we have a busy month ahead.

The first week of June is AED CPR awareness week. We encourage you to take a look at our program Drill Doctor Heart and implement these programs in your schools, sporting teams, houses of worship, and anywhere people gather. June is also Pride Month and includes Juneteenth. HCMA strives to support all communities with HCM. We are happy to shine a light on our HCM patients and families in the Pride and African American communities.

In May, I was honored to participate in a forum at the World Heart Federation in Geneva, Switzerland. As the HCMA embarks on its initiative to find more international advocates to help develop through the HCMAI program, I was able to meet other advocates worldwide. I'm getting a better understanding of some of the challenges low-income countries are encountering. We look forward to helping to create a world where those with hypertrophic cardiomyopathy have access to timely diagnosis and management at the highest level available in their nation.

We have made some significant progress in the past few months related to new HCMA Recognized Centers of Excellence programs. We will be making an announcement shortly on new programs coming your way. We have also been doing some work on our international front, identifying partners to help us raise awareness and improve care for those with HCM regardless of the geographic location.

On a personal note, June has been a particularly challenging time for my family regarding hypertrophic cardiomyopathy. Anniversaries can be very difficult and sometimes cathartic. On June 7th, 2008, I lost my father, Larry Flanigan, to complications of HCM at the age of 73. On June 12th, 1995, my sister Lori suffered a sudden cardiac arrest in her sleep. Five days later, on June 16th, 1995, my sister was pronounced dead, and later that day became an organ donor saving the lives of three strangers. Also, on June 16th in 1990, I suffered a stroke secondary to endocarditis, leaving me partially blind in one eye for the remainder of my life and with residual weakness on my left side. On June 21st, 1953, my grandfather suffered a fatal cardiac arrest the day before my father's high school graduation. There are obviously good memories tied to June in our family as well, graduations and birthdays have brought us happy times while we miss those who are no longer with us.

We will be instituting summer hours beginning this week. The office will close at 3:00 p.m. on Fridays to allow our staff a little extra sun time this summer.

Best wishes to all.

Lisa Salberg

CEO and Founder HCMA

All of June: Online Discussion Groups

Browse our June Discussion Groups to find one that fits you:

Click here to see June's Groups

June 2nd: NICE has approved mavacamten!

NICE has approved mavacamten, the first treatment that specifically targets obstructive hypertrophic cardiomyopathy (HCM), in the UK!

Read the press release here.

June 15th: Bighearted Warrior Tour with the University of Maryland

6:30 pm-8:30 pm EST: Join us for this virtual Bighearted Warriors Tour with the team at the University of Maryland. For agenda and registration, click here!

Julie Russo

Volunteer Coordinator

Volunteer!

Volunteers greatly contribute to the success of the Hypertrophic Cardiomyopathy Association and our commitment to provide support, education, advocacy and advancement of research, understanding and care to those with HCM. The tireless dedication from our volunteers give the extra hand needed to make our communities health care experiences positive ones. To learn more about HCMA volunteer opportunities and get involved click here.

Intern Corner

June Featured Intern

Arianah Bell

I recently graduated from Drew University with a Bachelor's degree in Political Science. I also plan to pursue my master's and Juris doctorate degrees in the future, ultimately focusing on a career in non-profit work. I am an ardent supporter of community-based projects in areas involving: healthcare, reproductive rights, social

justice, and education. I applied for this position at HCMA because their mission-driven work deeply aligned with my belief in working to make the world a better place and improve the lives of people. I hope to contribute to HCMA's mission and work collectively to bring awareness to this fundamental cause.

Sabrina Cuddy & Linda Montgomery

Intake Coordination Team

There is finally more clarity about exercise for HCM patients. Some doctors say, "don't do anything physical," and others say, "do whatever you want." We can likely agree on one thing – they're both wrong, and the best advice is somewhere in the middle.

A recent study of the exercise habits of over 1500 HCM patients has shed additional light on this important topic. You can hear about the research findings and recommendations for yourself. Lisa Salberg, Dr. Rachel Lampert, and Dr. Sharlene Day discussed the study and its implications for HCM patients during a webinar on May 30th, which you watch now.

Cody Stubben

Social Media Coordinator

Father’s Day is quickly approaching and will be here before you know it. We’ve got the perfect way to honor Dad. Donate to the Hypertrophic Cardiomyopathy Association on his behalf! Your gift will help support those affected by HCM, and advance research and treatment options.

Show Dad some love today by giving now!

DONATE

Stacey Titus

Center of Excellence Coordinator

The University of Maryland - Baltimore, MD

The Hypertrophic Cardiomyopathy Program at the University of Maryland Heart & Vascular Center is Recognized as an HCMA Center of Excellence and the only HCMA-recognized center in the state of Maryland at this time. The University of Maryland’s team of cardiologists, cardiac surgeons, geneticists, electrophysiologists, nutritionists, and physical therapists are ready to treat you and guide you toward healthy lifestyle choices as you learn to live with this disease. An accurate diagnosis is the first step to treatment. Once we have confirmed your specific condition, The University of Maryland Team can begin tailoring your care plan. The team is currently seeing patients in Baltimore, Columbia, Owings Mills, and Westminster.

Julie Olsen

Events Coordinator

Unmask HCM Annual Meeting and Unmask the Great Masquerader Ball

You are invited to join us on Saturday, October 21st at the Hyatt Regency in Morristown , NJ for the return of the annual meeting. It is with great pleasure that we are able to host this in-person full day event again. Join us for a day of patient education and advocacy and a night of food, fun and entertainment as we honor the contributions of the HCMA community, HCMA recognized center of excellence, and present our first Founders' Award. This is an event you won't want to miss! Click here for details and tickets:

Can't make it, want to help, we are in need of silent auction items. Please email me: julieo@4hcm.org if you can help. No donation too small or too big.

Sponsorship opportunities available, email me: julieo@4hcm.org for more information.

Ross Hadley

Project Manager

HCMA travels to policy conference

Last week, I had the privilege to moderate a panel, "Novel Nursing: Helping Patients Adapt to Medical Innovation," on the challenges and opportunities created by Myosin Inhibitors in Hypertrophic Cardiomyopathy at the Cardiovascular Health Policy Summit in Washington DC.