A NOTE FROM LISA
Dear bighearted friends,
I hope you’ve all had a wonderful summer and have been able to enjoy some outdoor activities with friends and family. It has been a very busy summer for the HCMA. Between June and August, we concluded five site visits to new potential HCMA Recognized Centers of Excellence. During this time, we’ve been able to gather with many of you during our regional meet-and-greets.
In August, we conducted a webinar to collect information to help us build a new and more specific patient-reported outcomes tool. We are
seeking to make improvements to the KCCQ to make it more HCM-specific. Your input is needed to ensure we are able to ask the right questions in the right way to truly assess someone’s quality of life. Please take this survey now. HERE [3]
I’m looking forward to seeing many of you in October. Our annual meeting [4] will take place on October 18th and 19th in Morristown, New Jersey, and hotel block reservations are still available at a discount price [5]. [6] Please remember to sign up early so we can plan accordingly. The early bird hotel special will conclude on September 12. We are holding our first 5K, and you can join us in person or virtually on October 19. Register HERE. [7]
I am writing this letter while walking down the streets of Madrid, Spain, thanks to technology. I am here for the Global Heart Hub Cardiomyopathy Council meeting, in which we will be working with our international partners to identify the best path forward to raising public awareness on cardiomyopathies in general and HCM specifically. From here, I’ll head to the European Society of Cardiology (ESC), where there is a lot of new data to be presented on new therapeutics in the thick hearted muscle disorder space. We will also have a trade show booth on the medical education floor promoting HCM Academy. Look for a live broadcast over the next few days, live from the floor of ESC.
September brings us to a number of different events around the country. We are happy to participate with the American Society of Echocardiography and appreciate the volunteers who serve as live echo models to provide real-world sonography training. We will also hold our in person Bighearted Warrior Tour meeting in Baltimore on September 13, with our partners at Johns Hopkins. Register HERE
The HCMA staff will divide and conquer at the end of the month, with several attending the Heart Failure Society of America, where we will partner with our friends from the SADS Foundation on the exhibit floor. Additionally, we will be participating in the American Academy of Pediatrics (AAP) scientific sessions, where we hope to raise awareness of the importance of knowing one’s family heart health history during the well-child examination. We are organizing a meet and greet while we are at AAP in Denver, Colorado, Sept 28th, and I hope to see you there. Register HERE
Beginning in October, our online discussion groups will include some new educational components. Please keep your eye out for these wonderful opportunities to learn and ask questions.
I closed this email on a somber note. It is with deepest sympathies that we announce the passing of long-time community member Justin Vigile. When Justin was just a teenager, he accompanied me and other advocacy representatives in Washington, DC as we worked to secure the Genetic Information Non-Discrimination Act (GINA). GINA was signed into law in 2008, and I’d like to believe that it was contributions from real patients like Justin that brought us the protections we needed as a genetic disease community. Our thoughts are with his family during this very difficult time. Rest in peace, Justin. We will not forget you.
Best wishes,
Lisa
P.S. There is important project regarding concerns involving generic atorvastatin and metoprolol. Please keep reading to learn more.
KCCQ Survey
The HCMA has partnered with the renowned research team at Saint Luke’s Mid America Heart Institute to create a specialized version of the KCCQ survey specifically designed for the HCM community. This important collaboration aims to better capture your daily experiences—helping us understand what makes a good day versus a challenging one, insights that aren’t always fully recognized during clinical visits.
Your participation in this survey will contribute to meaningful research that has the potential to inform future treatments and ultimately improve quality of life for everyone living with HCM. Together, we’re working to ensure that your voice and experiences help shape the care you deserve.
This survey represents our commitment to understanding not just the medical aspects of HCM, but the real-world impact on your daily life—because your perspective matters and drives better outcomes for our entire community.
We want to hear from you
ProPublica has been reporting on how the FDA is allowing some foreign drugmakers to send drugs to the United States from factories known to have violated manufacturing standards, READ MORE HERE
As they continue to investigate, we are interested in learning more about potential concerns involving various versions of atorvastatin and metoprolol. If you were prescribed or are taking either of these generics and have concerns that the medication is ineffective or causing other unexpected or new side effects, we’d like to speak with you.
If you are interested in sharing your experience, please contact the HCMA at (973) 983-7429 or email Linda@4hcm.org
UPCOMING EVENTS
HCMA Annual Meeting Event Weekend. Oct 18th-19th
Join us in Morristown, NJ for our Annual Meeting, Gala, and our Bighearted 5K.
Registration and early bird pricing is open now!
Sept 13th: Join the HCMA for the free JHM HCM Patient Symposium.
Meet the Johns Hopkins HCM team, learn about the latest in HCM treatments, and connect with other HCM patients.
There is no cost to attend this event; HCM patients, family members and friends are welcome to register and attend. Space is limited; registration is required for all attendees.
Location Name: Johns Hopkins Hospital
Room Number: Zayed Building
Address: 1800 Orleans Street
Sept 15th: Join us for a fun day of golf and camaraderie honoring George Dooley! Enjoy a continental breakfast, driving range, hot buffet lunch, greens fees, cart, and prizes. Chance to win amazing raffle prizes and 50/50.
**Tickets for golfers & non golfers available**
PROCEEDS BENEFIT: Hypertrophic Cardiomyopathy Association and Roselle Catholic High School student scholarships.
DATE: Monday, September 15, 2025
LOCATION: Galloping Hill Golf Course
3 Golf Dr., Kenilworth, NJ 07033
TIME: 7:15 AM Check-In
Sept 23rd: Tee off with friends, colleagues, and fellow community members as we honor TJ and raise money for the Hypertrophic Cardiomyopathy Association (HCMA) in a scramble round of golf.
The day will include a friendly round of golf, contests during your round of golf, a delicious lunch, and an open bar. A ton of raffles will also be available, including a 50/50. Whether you’re a seasoned golfer or just looking to enjoy a day outdoors for a great cause, this event is perfect for everyone.
Register today to secure your spot and join us in making THE TJ DIMARCO GOLF OUTING a success.
DATE: 09/23/2025
LOCATION: Old Bridge Golf Course – The Rose
157 Lambertson Road, Matawan, NJ 07747
TIME: 7:00 AM Check-In
Sept 28th: Meet and Greet in Denver Colorado.
If you happen to be in Denver, CO, on Sunday, September 28, Lisa Salberg, CEO and Founder of the Hypertrophic Cardiomyopathy Association (HCMA), will be hosting a “Meet and Greet” from 6:30 to 8:30 PM MT at Prospect’s Urban Kitchen & Bar in Downtown Denver.
Hannah Wolf, ADN, RN
Patient Navigator
Hannah Wolf, ADN, RN, serves as a Patient Navigator for the Hypertrophic Cardiomyopathy Association (HCMA), offering both clinical expertise and personal insight to those navigating hypertrophic cardiomyopathy. Diagnosed with HCM at the age of 14, Hannah brings firsthand experience with the condition—from early symptoms through advanced treatment and heart transplant. Hannah’s professional background in home health and skilled nursing care enables her to support patients with complex, chronic conditions. She is also skilled at guiding families through the healthcare system with empathy and understanding.
Originally from Tuscaloosa, Alabama, Hannah now lives in Biloxi, Mississippi with her husband, who serves in the United States Air Force, along with their two dogs and cat. Her passion for advocacy, education, and compassionate care makes her a valued member of the HCMA team and a trusted support for patients and caregivers alike.
Julie Russo
Legislative Coordinator
Call to ACTION! Urge Congress to Invest in Medicaid and Medicare!
No Cuts to these crucial programs! Sixty years ago, Medicaid and Medicare were created when President Lyndon B. Johnson signed the Social Security Amendments into law. These programs were central to Johnson’s “War on Poverty,” designed to combat health and economic inequality.
Today, sixty years later, Medicaid and Medicare face unprecedented threats. With the passage of the One Big Beautiful Bill Act (OBBBA), Congress approved $1 trillion in cuts—the most significant health care reduction in U.S. history.
The consequences are devastating:
- More than 15 million people will lose health insurance
- Hundreds of rural hospitals are projected to close
- Approximately 51,000 people could die from preventable causes each year
We need your help!
Click here to send a message to Congress telling them to invest in these critical programs, not cut them.
Sabrina Cuddy
Intake Coordinator
Augusts Theme of the month is Newly Diagnosed
Are you newly diagnosed with HCM, or have your symptoms recently changed?
We understand that having a new diagnosis or changes in your condition can be daunting, but please know you’re not alone. The HCMA is here to support you every step of the way! In addition to the helpful info in this newsletter and on our website, we encourage you to contact us for an Intake and Navigation Call or a short Update Call if you’ve done Intake before. To get started, sign up HERE or by calling +1 973-983-7429. Those outside the US can request a Zoom call to save on long-distance call costs.
Olivia Esposito
Graphic Designer
Our Annual Patient Meeting in Morristown NJ, is rapidly approaching. If you haven’t already, you can register HERE.
One of the major pieces of this meting is our event book. We are now accepting submissions for our event book. If you would like to honor a member of the HCM community (a loved one, a doctor, a nurse, a COE, or even the HCMA) please fill out this survey. Or reach out to me at olivia@4hcm.org.
Elena Morgan
Assistant Director
The HCMA is a new member of the National Health Council (NHC). Learn more about how the HCMA’s mission relates to their work here.
Pamela Posnock
Community Project Manager
The All Hearts Collaborative is hitting the road to spread its message about the importance of knowing your family’s heart health history!
Last week was National Health Center Week 2025, a time dedicated to celebrating America’s Health Centers and their 60-year commitment to providing high-quality, affordable, and accessible care. HCMA staffers attended four community health centers in Newark, hosting educational and awareness booths.
The All Hearts Collaborative is a health equity initiative spearheaded by the HCMA, in collaboration with the Preventive Cardiovascular Nurses Association (PCNA), BRICK Education Network, and other community partners.
