Sabrina Cuddy • July 9, 2024
July is about COE Care at the HCMA! 

Have you ever wondered what a Center of Excellence (COE) is? A COE is a dream team of specialists who work together to provide top-notch care to patients with specific diseases. They follow the best, most up-to-date practices. Many medical facilities strive to become a COE by forming a dedicated team that focuses on treating diseases like Cancer, Diabetes, Alzheimer’s, and our main focus, HCM.

In 2004, the HCMA launched the “HCMA Recognized Centers of Excellence” program. This program plays a pivotal role in ensuring that the services and procedures offered at recognized COEs align with the latest best practices for managing patients with HCM. These centers use a team-based approach to care, involving HCM specialist cardiologists, genetic counselors, imaging specialists, and more. A COE has state-of-the-art facilities, scanning protocols, and well-trained technicians. 

Our hard work has paid off! The American Heart Association and the American College of Cardiologists have embraced the HCMA’s care model in their best practice guidelines for HCM, 2020/2024. 

Why consider seeking care at a COE?  

Because it matters!  In the USA, most community cardiologists typically encounter around 5-10 cases of HCM in their practice. HCM is an incredibly diverse disease. These cardiologists may not be fully familiar with the intricate variations of HCM anatomy, such as the varying degrees and locations of thickening in the heart, which can impact heart function. A COE program may have experience with hundreds or even thousands of HCM cases, making them much more likely to understand your specific presentation of HCM. COEs are often located within large medical centers with top-quality, up-to-date equipment. 

If you need invasive treatment for obstruction, such as myectomy surgery or alcohol septal ablation, it’s crucial to seek care at a high-volume center. Even at a COE, it’s vital to ask about the frequency of these procedures performed by your potential surgeon. The statistics overwhelmingly indicate that surgeons performing a higher volume of these specialized procedures are associated with significantly lower rates of complications. So, to make sure your surgery goes as smoothly as possible, we highly recommend consulting with a high-volume COE (which can be arranged via telemedicine in some instances) before consenting to a procedure. 

For a deeper understanding of the contrast between myectomy in a high-volume center and lower-volume hospitals, we encourage you to explore  “Septal Reduction Therapy for Obstructive Hypertrophic Cardiomyopathy: Volume Still Matters for Septal Myectomy” in the Journal of the American Heart Association, Volume 12, Number 10, published on 15 May 2023

Seeking COE care?  

Discover a list of recognized centers by visiting our website at  https://4hcm.org/center-of-excellence/. Be sure to use the phone number on our website to reach the COE team directly. We want to make sure you see the HCM experts and not just any cardiologists at a large medical center!  While our recognition currently extends to COEs in the United States, we are here to assist if you are looking for recommendations in other countries. Simply reach out to us for more information. We’re committed to expanding and evaluating new programs for COE status. We want to ensure that you can access COE care near your home. 

Knowing that access to care can be challenging, we offer need-based travel grants to help individuals receive the best care for HCM. Contact us at +1 973-983-7429 and inquire about the  Lori Fund , or apply directly on our website. The Lori Fund reimburses you for eligible gas, airfare, hotel accommodations, and food expenses, offering up to $600 annually to support your journey to a Center of Excellence.

We’ve also teamed up with Angel Flight East to facilitate patients’ travel to a COE for care. Even if you are not in the Eastern US, their network can help connect you with another regional Angel Flight partner. Find out more at  https://angelflighteast.org/  or call us, and we will gladly assist you in connecting with a suitable flight. 

We are excited about helping you access exceptional COE care for HCM. Please don’t hesitate to contact us for any support, guidance, or information you may need on your journey toward receiving the best possible care.

There needs to be 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.

Experts agree that exercise is healthy for people with HCM. Depending on symptoms, most people with HCM can safely do light exercise like walking. 

Those with HCM who have no symptoms  may  be able to exercise without restrictions.

Most people with  symptomatic  HCM aren’t advised to do heavy exercise. It’s best to avoid intense activity that involves bursts of sprinting, heavy weightlifting, or contact sports like football. 

  • Research indicates that intense physical activity predisposes susceptible people with HCM to arrhythmias and possibly sudden death.
  • The LIVE-HCM study results found that for most with HCM self-reporting for the study, vigorous exercise did not raise the risk of serious cardiovascular events such as dangerous arrhythmia, appropriate ICD shock, or sudden cardiac arrest.
  • More research into this topic is ongoing, so we will know more soon.

Fast Facts About Exercising When You Have HCM:

  • For most patients, HCM doesn’t interfere too much with their lifestyle.
  • HCM patients should not lead a sedentary lifestyle.
    • Walking, bicycling, lap swimming, and similar activities are generally safe forms of exercise. If swimming, be sure there is a lifeguard or have a buddy.
  • Those with symptoms should not overexert themselves.
    • Listen to your body and slow down or stop if your symptoms increase. 
  • When exercising, avoid being in extreme temperatures and stay hydrated.
  • If you want to join a gym, be familiar with the safety laws in your state.
    • Are gyms required to have automated external defibrillators (AEDs)?
  • Work with your HCM specialist to find the best activity level for you. 

An HCM specialist and team created a helpful approach to fitness at the Peter Munk Cardiac Centre in Toronto, Canada. This program has three fitness levels. Their website shows you how to maintain heart health through videos, medical information, and a proven exercise program.  https://hearthealthbydesign.com/.

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By Lisa Salberg June 9, 2025
June 2025 is upon us and with it comes a great deal of mixed emotions for me and the basis of the founding of HCMA. Origin stories how things began has become quite a topic for Disney movies and marvel comics. But today I'm going to talk about origin stories from the HCMA. The services of the HCMA are based upon lived experience from real patients seeking better care and a chance of a future. Why are bases of intake and navigation calls? They are the starting point for deeper understanding of the condition and access to care. Because on a June day in 1995 my sister, who was 36 years old at the time, was in a situation we could never have predicted. And, at that moment in time, having more knowledge and understanding of the disease could have played important roles in decision-making prior to her cardiac arrest and after. On June 6th, 2025, my sisters held a baby shower for me excited at the prospects of their new niece coming in July. June 12th 1995. My sister would have a cardiac arrest and we would wait for her to wake up. Like any family who has waited for a cardiac arrest victim to wake up or not, nothing could have prepared us for what lay ahead. June 16th, 1995 my sister was pronounced dead and in the early morning hours of June 17th her organs were procured and given to others in hope of saving their lives. On Father's Day a wake was held. The following day was her funeral. I don't think I will ever forget the look on my father's face as he stood next to his daughter's coffin on Father's Day. But I had not considered, on that day, and because my brain couldn't handle it, was that when my father was 18 years old, he stood next to his father's coffin on Father's Day, which also should have been his graduation day. On June 21st, 1953 my grandfather had died from a sudden cardiac arrest at the age of 43. 17 years ago my father also passed on June 7th, 2008. On June 16th, 1990, a few short weeks after my wedding, I thought I had a headache and that was unusual. It was actually a stroke, one of a series of strokes that came after I had received dental work without antibiotics and developed endocarditis and multiple clots formed throughout my body. June always makes me a little nervous…and it reminds me of the fraility of human life. As with any other month of the year, good things in June have happened for our family as well, including my sister and brother-in-law's wedding and her birthday. Happy anniversary, Lynn and Kevin! It was also my mother's birthday and on my mother's birthday in 1976, my life was made better by my new neighbors and lifelong best friend coming into my life. It's hard to believe it's almost 50 years ago. So on this June 2025 this month's message will not be about the places that I've been in the past month or where I'm going next month. It will be to remind you all that this community was built because of one special woman. Her name was Lori and she was my sister and she will always be at the heart of our big-hearted community. I miss you Lori! Today and always. Please take a look at our calendar of events for June and July. We have some great programs coming up including an in-person event in Seattle. I hope to see many of you there. Make some good memories this June Sincerely, Lisa
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