Greetings to all of our Big-Hearted friends,

As May is upon us, I hope you are enjoying some beautiful weather and time outdoors with your friends and families.

Later this month, an important article will be published with the results of the live HCM Study. We have long known that exercise is essential for all, including those with hypertrophic cardiomyopathy. Now we will have a better understanding of how to both be safe and exercise with HCM. I want to thank all patients who have participated in this study over the past five years and the investigators who have worked tirelessly to help organize the data. This information is still embargoed, but we will hold a webinar to discuss the findings with the community as soon as permitted. Please stay tuned for the registration date coming later this month.

The HCM Nest program is moving forward beautifully, with over 800 engagements since March 1st. The program will continue to grow and provide more educational opportunities to patients and families in the coming months. We welcome your feedback as we develop this new tool.

May 1st was an essential milestone in the Hypertrophic Cardiomyopathy Association’s endeavor to address inequities in healthcare access with the first meeting of our Health Equity committee. We look forward to bringing you more information on gaps in care and new programs that will address these gaps. Health equity is more than just a tagline. It addresses unmet needs from various constituency groups within the hypertrophic cardiomyopathy community, including but not limited to African-American, Latino, pediatric, rural, international, and more. We look forward to making meaningful progress in health equity in the coming years.

Please mark your calendars for October 21st, 2023, as we are bringing back our annual patient meeting. We are excited to be back in person for the first time in many years. I can't wait to see you all in person and for you to meet the fantastic HCMA staff and contractors, as well as many new physicians and nurse practitioners in our community. A full agenda and registration information will be available shortly.

Nationally May is Mental Health Awareness Month, and for the HCMA, it is also medical management May. Both issues are critically essential to discuss within the community. It is also timely as we have just completed the first year of a myosin inhibitor being available clinically to the community. We are all still learning how to best utilize this new tool in the toolbox, but we are very optimistic about how the first year has played out.

Please stay tuned to our YouTube channel and social media channels for breaking information as it becomes available on matters of importance to the HCM community.

Best wishes to all.

Lisa Salberg

CEO and Founder HCMA

All of May: Online Discussion Groups

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

Click here to see May's Groups

May 4th: In Person Meet & Greet Opportunity Cincinnati, Ohio

6:30 pm-8:30 pm EST: If you happen to be in the Cincinnati, OH area on Thursday, May 4th, we have reserved space at BJ's Restaurant & Brewhouse from 6:30 – 8:30 PM where Lisa Salberg, HCMA CEO and Founder, will be hosting a "Meet and Greet", click here!

May 23rd: Bighearted Warrior Tour with UC Heath

8:30 pm-10:30 pm EST: Join us for this virtual Bighearted Warriors Tour with the team at the University of Colorado Hospital. For agenda and registration, click here!

Julie Russo

Volunteer Coordinator

Volunteer!

Volunteers significantly contribute to the success of the Hypertrophic Cardiomyopathy Association and our commitment to providing support, education, advocacy, and advancement of research, understanding, and care to those with HCM. Our volunteer's tireless dedication gives an extra hand needed to make our communities health care experiences positive. To learn more about HCMA volunteer opportunities and get involved, click here.

Sabrina Cuddy

Intake Coordinator

HCM Medications

May is about medical management here at the HCMA. Medical management means using medications and other non-invasive therapies to treat disease and relieve symptoms. It's exciting that new treatments for HCM are being studied and that the FDA approved Camzyos last year! It is historic for treatments to be targeted for HCM.

Intern Corner

May Featured Intern

Oluwademilade (Olu) Ogunlade

I am a Nigerian-American born and raised in Brooklyn, NY. I hold a Bachelor of Arts in Politics, Economics and Law from SUNY Old Westbury. I am a first-year student at the Thurgood Marshall School of Law at Texas Southern University. In my free time, I enjoy writing, cooking, and reading. Advocacy is essential to me because I see value in fighting for change, so I joined HCMA as a Legislative Intern. I am excited to get to work and look forward to igniting change!

Cody Stubben

Social Media Coordinator

Donate to Hypertrophic Cardiomyopathy Association

Mother's Day is just around the corner, and we have the perfect gift idea! Make a donation to the HCMA on behalf of Mom. Your gift will help support families affected by hypertrophic cardiomyopathy, and advance research and treatment options. Moms are superheroes, and they deserve our support.

Let's show our love and gratitude by donating to the HCMA on behalf of mom this Mother's Day. Together, we can make a difference in the lives of those affected by hypertrophic cardiomyopathy. Click Here

DONATE

Stacey Titus

Center of Excellence Coordinator

The University of Colorado Hospital - Aurora, CO - Hypertrophic Cardiomyopathy Association

The University of Colorado is one of our newest HCMA Recognized Centers of Excellence. The UCHealth Team is honored to be recognized and work in partnership with the HCMA to genuinely provide the highest standard of care for patients with Hypertrophic Cardiomyopathy.

Highlighted Volunteers for May 2023

HCMA Ambassador Program Core Team

Maier Bianchi

Joey Graham

Lekeshia Henderson

Amy Mann

Bill Rossi

Victoria Wyatt

66 Ford Road, Suite 213B l Denville, NJ 07834 l (973) 983-7429 l 4hcm.org