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Last October, I wrote about my first time attending the Hypertrophic Cardiomyopathy Association’s Annual Patient Meeting. If you’d like to compare and contrast my experiences between last year and this year, here were my reflections from 2025.

Note: This year’s reflection is a comprehensive one. If the end is cut off by your email provider due to the length, just click “View Entire Message” to see the rest, or read it in full on your web browser or Substack App.

You won’t find the word “pivotability” in Merriam-Webster’s dictionary. But it’s a concept that’s easy to grasp, especially for patients managing chronic illness.

Pivotability is “how open, flexible and agile you are to change.”1 It encompasses the ability to pivot, to chart a new course, and, perhaps most importantly, to be resilient.

This word loomed large at the Hypertrophic Cardiomyopathy Association’s (HCMA) Annual Patient Meeting at the Hyatt Regency in Morristown, New Jersey on Saturday, October 10, 2026. Not just because those of us who attended were gifted with t-shirts announcing that “Pivotability is My Superpower” or because the event organizers had to modify their plans when the remnants of Hurricane Isaias conspired to postpone their planned 5K run/walk the following morning. Rather, it was because this skill of pivotability wove its way into every topic and presentation in some way, shape, or form.

In this article, I will review some of the Patient Meeting’s highlights, especially as they relate to this idea of pivotability.

An Overview of HCM and the HCMA

2026 marks the 30^th anniversary of the Hypertrophic Cardiomyopathy Association (HCMA), whose mission is “Providing support, advocacy, and education to patients, families, the medical community, and the public about hypertrophic cardiomyopathy and all thick heart muscle disorders, while supporting research and development of treatments and diagnostics.”

Founder and CEO Lisa Salberg opened the day with a grand entrance to the sounds of Taylor Swift, and she wove her way through the conference room, hugging about a dozen people along her path up to the podium. In the room were nearly 200 attendees: HCM patients, their families/friends/caregivers, doctors from the Centers of Excellence in Hypertrophic Cardiomyopathy, representatives of the pharmaceutical companies who develop drugs for HCM patients, the HCMA staff and board, and other interested parties.

Lisa reviewed the history of the HCMA, from the early days of fax machines and message boards, through the creation of the Centers of Excellence, drug companies and cardiologists turning their attention to HCM, and going global with patient outreach. On display at the front of the room throughout the day, next to a photo of the two men together in 2009, was the original 1959 typewritten letter from Dr. Eugene Braunwald to Claude Brady, diagnosing him as the first patient with Hypertrophic Cardiomyopathy. Mr. Brady’s local doctor first heard his heart murmur in 1948, but Dr. Braunwald was the first to describe it in the modern terms we now use for HCM.

As she turned her attention from the past to the future, Lisa announced two upcoming initiatives, including a partnership with the American Heart Association (4 select hospital locations will distribute flyers to HCM patients offering free support) and the “Know Your 9” Campaign, in which patients will get their 9 most important HCM data points2 listed on a wallet card so they can easily share it with their doctors.

Dr. Martin Maron, who happens to be my HCM Cardiologist, took to the podium next for an overview of HCM. A way to level-set for anyone in the room who was new to the disease or the field of study. In short, Hypertrophic Cardiomyopathy is the most common genetic heart disease in the world, affecting between 1 in 200 and 1 in 500 people worldwide. 70% of HCM patients have an obstruction to blood flow through their left ventricle, where the wall thickness is greater than 15mm. The rest are unobstructed.

“In 2026, HCM is a highly treatable heart disease,” said Dr. Maron. “The primary goal in HCM treatment is to improve quality of life by restoring it to normal or near normal.” Treatment plans between 1999 and 2019 led to a 53% reduction in mortality rates for patients with HCM.

Pharmaceutical Pivotability

Since 1957, Beta-Blockers, a class of drugs more commonly used in other cardiac conditions like high blood pressure and angina, have been the first-line medication treatment for HCM patients due to their ability to “slow the heart beat and reduce its force of contraction.”3 In the absence of other options, they were a good starting point, but it was time for pharma to pivot.

In 2012, a company called MyoKardia recognized the need for targeted therapies in Hypertrophic Cardiomyopathy and reached out to Lisa and the HCMA to learn more about what would help patients the most. While MyoKardia was later acquired by Bristol Myers Squibb, the drug they were developing became Camzyos (or Mavacamten), the first-in-class Cardiac Myosin Inhibitor (CMI). A drug that has been revolutionary in HCM care, for patients with an obstruction, since its approval by the U.S. Food and Drug Administration (FDA) in 2022.

In late 2025, a second Cardiac Myosin Inhibitor, Myqorzo (or Aficamten), from Cytokinetics, was also approved for HCM patients with an obstruction. “Cardiac Myosin Inhibitors (CMIs) treat HCM at its source rather than managing symptoms.”4

But in an awesome display of pivotability, the doctors and pharmaceutical companies working in HCM weren’t satisfied with these two new medications, despite their remarkable impact on patients. Rather, a whole industry has shifted towards developing additional targeted therapies for both non-obstructed patients (a population with huge unmet need) and obstructed patients. Here’s what else we learned about in the clinical trial pipeline for HCM:

• Both Camzyos and Myqorzo are being studied to see if they can have a positive impact in HCM patients without an obstruction. So far, Myqorzo’s ACACIA-HCM trial yielded positive results. According to Dr. Maron, it’s the “first time in 60 years we’ve been able to demonstrate that a medical therapy has been clearly associated with a real clinical benefit for patients with non-obstructive HCM. A big deal in a lot of ways, for that reason.”

• Haya Therapeutics is investigating an Antifibrotic Therapy. Fibrosis is a stiff scar inside the heart muscle and a key feature of HCM. It impacts how well or poorly the heart can relax and squeeze. Scarring may generate abnormal rhythms and can be assessed with Cardiac MRI with contrast. This drug is an Antisense Oligonucleotide (ASO), which is an RNA therapy (not a gene therapy). WISPER/HTX 011 is about to begin a Phase 2 clinical trial.

• Imbria Pharmaceuticals is currently enrolling patients in the US and Europe for their Phase 3 clinical trial, FORTITUDE-HCM. Their drug, Ninerafaxstat, is designed to shift energy use in the HCM heart from fatty acids to glucose and acting in the mitochondria, where heart cells produce energy. The heart needs a lot of energy in the muscle to relax and contract well. This drug is directed at patients with non-obstructed HCM.

• Braveheart is bringing us HRS-1893, which would be a new Cardiac Myosin Inhibitor. According to Dr. Milind Desai, Director of the Center for HCM at the Cleveland Clinic, one of the most engaging presenters of the day, early data shows this drug “Maintained a favorable safety profile with minimal changes in left ventricular ejection fraction.”5 In other words, it was effective in reducing symptoms without causing new signs of heart failure.

• Edgewise Therapeutics’ drug, EDG-7500, a cardiac sarcomere modulator, differs functionally from the others listed here because instead of an on/off approach to the full cardiac cycle, it targets a specific moment at the beginning of the cardiac cycle. Early clinical data shows that it allows obstruction to be removed without reducing Ejection Fraction. Or, as Dr. Michael Ayers, Director of the Center of Excellence in HCM at UVA Health described it, “you can have your cake and eat it too.”

• Tenaya Therapeutics is working on the first gene therapy for Hypertrophic Cardiomyopathy patients. TN-201 targets the MYBPC3 gene, which is one of the most common genetic markers of HCM (and the one I have). Dr. Radhika Agarwal, Physician & Researcher from Mass General Brigham, did a deep dive into how gene therapies work. To summarize, you need the right Vector (virus) carrying the right Payload (gene/protein/code) into the right Patient at the right time. And delivering that gene is not the same as treating a disease. It must be accompanied by the right manufacturing, the right pricing, and equitable access to the treatment. Early clinical data shows that patients who received TN-201 began to show improvements in their biomarkers 6 months after dosing.

And after all that pivoting to new options, where does that leave Beta-Blockers? In the last 60 years, there has only been one clinical trial to determine how effective Beta-Blockers truly are for HCM patients. That MAPLE-HCM study showed both that the effects of one Beta-Blocker, Metoprolol, actually made symptoms worse with exercise as compared to patients who were not taking any medications and that patients who take Cardiac Myosin Inhibitors can stop taking Beta-Blockers. Dr. Maron assessed there is now “diminished enthusiasm for Beta-Blockers because of the effects on exercise, as well as other side effects” and that “Now we have other options.” Talk about the evolution of an entire field!

Surgical Pivotability

I recently wrote about the 10-year anniversary of my own open-heart surgery, a septal myectomy to remove the obstruction to blood flow in my left ventricle. In that article, I described the surgery and why it was such an important advancement in HCM care, and I promised to provide an update on newer methods. As with pharmaceuticals, new tools for the toolbox are on the horizon, and those surgeons are in the process of pivoting to broaden the number of surgical methods they choose from. But the updates I had been looking forward to hearing all day differed slightly from my expectations.

What I expected was an emphasis on the new procedures, including one that has been developed in China called a Trans-Apical Beating Heart Septal Myectomy (TA-BSM). Instead, Dr. Gabor Bagameri, Cardiovascular and Cardiothoracic Surgeon at the Mayo Clinic, drove home the point that “Myectomy works.” He focuses on creating a tailored surgical plan for every patient and said “What matters most is not just the operation itself-it is matching the right patient, anatomy, surgeon, and center.” He certainly had my attention with the video he showed of a real septal myectomy.

Dr. Joshua Scheinerman, Cardiothoracic Surgeon at NYU Langone Health stepped up to the microphone next and largely agreed with Dr. Bagameri’s take. He, too, emphasized the improved survival rates with myectomy, saying “It will make you live longer and feel better.” He even called it the “Most complete and long-lasting technique to separate the inflow and outflow portions of the [left ventricle] – gold standard for relief of outflow tract obstruction.”

However, Dr. Scheinerman performs a new Robotic Septal Myectomy on select patients using the Intuitive Da Vinci Xi Robot System. Using only a very small incision in the right side of the chest, this procedure avoids division of the breastbone (aka a sternotomy, aka what I had). We got to see a video of this surgery as well, which I thought might be scarier than the one done manually by Dr. Bagameri, but it turned out to be quite fascinating in its adaptability and precision.

Lastly, Dr. Scheinerman touched on the Trans-Apical Beating Heart Septal Myectomy that’s being developed in China. “This won’t be the panacea some people are talking about,” he said. While he agrees it will be important to bring this option to the US and to do trials, he believes this will be another tool in the toolbox, just like the myectomy and the robotic surgery. All of which is to say he believes the future in surgery for HCM patients with obstruction is individualized care, understanding that all of us have different phenotypes, or symptom profiles, and the surgeries need to be tailored to each patient.

There’s that pivotability again!

Diagnostic Pivotability

Dr. Milind Desai returned to the podium to share a significant change in how Cleveland Clinic is approaching HCM diagnostics: they have started using AI. He reported that the Clinic used AI to evaluate every patient’s EKG for HCM, even if it appeared normal to the physician. The AI tool discovered an additional 50(!) patients with HCM and provided a precision diagnosis.

Dr. Desai also demonstrated that diagnosis via echocardiogram alone is challenging, showing us 4 HCM patient echoes that all looked completely different. In fact, the one that least looked like an HCM heart was the only patient who had a gene commonly associated with the disease. He joked that “this patient was told he had anxiety” before being correctly diagnosed. The room roared with laughter because so many of us have heard that fallacy from a doctor before.

His punchline?

“If you come to Cleveland Clinic, we can treat your anxiety with heart surgery.” The room roared again.

Pivotability in Pediatrics

Possibly the most rousing reaction from the crowd came during Dr. Jeffrey Bennett’s presentation. As Program Director of the HCM Center of Excellence at Cleveland Clinic Children’s, he reported on the positive results of the SCOUT-HCM trial, which studied the efficacy of the Cardiac Myosin Inhibitor Camzyos (Mavacamten) in pediatric patients. Based on those results, the FDA recently approved the medication’s use for “pediatric patients weighing at least 30kg (approximately 66 lbs) with symptomatic [obstructive] HCM.”6

The spontaneous applause began when Dr. Bennett described this as “a landmark event” and “incredibly exciting for our families,” later saying “It’s a new day for HCM.”

During lunch, we met two families with pediatric HCM patients via Zoom. One family from California had spent over 400 days in Rochester, Minnesota awaiting a transplant at the Mayo Clinic. The other spent 200 days on the transplant list in Texas, and that child’s sibling also needs a transplant. While the connection to these families had some technical glitches, it took nothing away from their messaging, which pulled on the heart strings of everyone in the room. Both families wore their “Pivotability is My Superpower” t-shirts, of which they were eminently deserving.

Patient Pivotability

I think my favorite speaker of the day was Willie McLaughlin, father of Olympic Track & Field gold medalist Sydney McLaughlin-Levrone and an excellent former track athlete in his own right. Willie received his Hypertrophic Cardiomyopathy diagnosis as a result of multiple family tragedies. “I’m a direct result of my brother’s death,” he said, after meeting Lisa Salberg at his brother’s funeral and learning about the genetic component of the disease.

A few years after his diagnosis, Willie went to his regular Center of Excellence at NYU for what he thought was a right heart catheterization procedure. Instead, he was told he needed a heart transplant immediately and couldn’t go home until he had one. 11 days post-op, he was finally released from the hospital with “no idea how to live as transplant patient, emotionally.” His pivotability and resilience were essential during that difficult time, and he adapted by helping mentor other transplant patients at NYU. Willie quoted Bob Marley, saying “You never know how strong you really are until being strong is your only option.”

Willie and Sydney collaborated on a series of online modules called “On Track with HCM,” which tackle topics in HCM like staying active, nutrition, and family.

Of course, Willie is just one example of the pivotability of HCM patients. Throughout the day, many others were recognized with GEM Awards for their volunteer efforts on behalf of the Hypertrophic Cardiomyopathy Association over the past year. Each award recipient has pivoted from focusing on self to helping advocate for, educate, and support others with HCM.

I was proud to be the recipient of a Gold GEM Award for my time spent as an Online Discussion Group Leader and HCMA Ambassador. Apart from my own recognition, which is always nice, I really enjoyed seeing my fellow volunteers recognized for their efforts, especially in front of this particular crowd of attendees.

The patients also had our own moment to shine in the afternoon during a workshop exercise. Inspired by the Disney and Pixar film “Inside Out,” the HCMA’s graphic designer, Demi Jorge, has drawn cute, heart-shaped, cartoon emojis for Joy, Confusion, Anxiety, Anger, Hope, Disgust, Grief, Sadness, and Curiosity, in addition to Pivotability.

During the workshop, patients were tasked with using these emojis (in sticker form!) to describe how we have felt at certain moments in our respective HCM journeys. My group, which included 3 other HCMA Ambassadors and one Ambassador’s spouse, had great conversations about how we felt at the time of our diagnosis, our emotions when we had to discuss our diagnosis with family members, and our reactions to finding the HCMA for the first time.

Mental Pivotability

Speaking of feelings, I would be remiss not to mention this final example of pivotability for the weekend…mental health. On Friday, October 9^th, the HCMA held its first ever “Hearts & Minds” training, a CME (continuing education) program for psychologists and social workers. Those in attendance, both virtually and in person, were treated to 6 hours jam-packed with information about how to treat patients with HCM and other heart muscle disorders. The HCMA plans to put the training online soon, and those practitioners who complete the requirements will be added to a new directory resource for patients.

I was fortunate to be in the room for most of the program, which was organized by Lisa Salberg, in collaboration with Dr. Sam Sears, a Cardiac Psychologist from East Carolina University, who was my favorite speaker from last year’s Patient Meeting. Other speakers included: Dr. Adaya Weissler-Snir from the HCM Center of Excellence in Morristown, NJ, Terrani Moore, LCSW, of East Carolina University Health, and Samantha McCrary, MS, Dr. Sears’ PhD student from East Carolina University.

Dr. Sears knows pivotability is essential in mental health care for cardiac patients. A few of my favorite nuggets from his talk:

• “Adversities continue. That’s why psychologic care matters.”

• “I want HCM patients to look for ways that they’re safe in the presence of threat.”

• 4.5% of the general population has PTSD. In heart patients, it’s 12%.

• If you’ve seen the television show “This is Us,” then you’ve heard the phrase “The Big Three.” Well, in cardiac psychology, it’s a quite different Big Three: Catastrophic Thinking; Hypervigilance; and Avoidance Behavior.

• Less than 1% of heart hospitals have psychiatric care, while 83% of cancer care centers have them.

• Psychoeducation replaces uncertainty and misinformation with accurate information and a plan for the future.

Ms. McCrary, who spoke both on Friday and Saturday, walked the mental health professionals through creating a clinical framework for HCM care using Leventhal’s Common-Sense Model. In her speech to patients, she used “The Odyssey” as a metaphor for the fact that uncertainty will always be part of our journeys. 37% of HCM patients meet criteria for anxiety disorder because “Our brains are good at keeping us safe. They are bad at keeping us happy.”

But her final messages hit home. Each of us has what we need within us to build a raft and set sail. We can identify what’s controllable and stage a psychological comeback that will hopefully enable a cardiac comeback as well, in the form of self-management.

Sound Bites from the Rest of the Speakers

• “Echocardiography is the workhorse” in HCM diagnosis. In other words, echocardiograms are the most commonly used diagnostic tool, but MRI is still “essential.” -Dr. Sabahat Bokhari, Director, HCM Center of Excellence, Rutgers Robert Wood Johnson Medical School

• About ¼ of HCM patients will develop Atrial Fibrillation (Afib) at some point in their lifetime, which is 4-6x higher than the general population. Afib increases risk of stroke. – Dr. Ethan Rowin, Associate Director, HCM Center, Lahey Hospital & Medical Center

• The terminology of describing HCM as “heart failure” is a problem because it doesn’t mean you’re headed for sudden death or a heart transplant; we need to rethink how we frame it. “Most people with HCM can expect to live a normal number of years, doing normal physical activities, and die of something else.” -Dr. Steve Ommen, Medical Director, Mayo HCM Clinic

• 35% of patients only had a gradient, or a significant increase in the pressures through the left ventricular outflow tract, a sign of obstructive HCM,7 after eating food. -Dr. Daniele Massera, Director, HCM Program, NYU Langone Health

• Implanted cardiac device choices are moving away from Transvenous devices with leads into the heart because those wires have a shelf life of 20 years max8, and they come with a higher risk of infection and challenges with removal. Newer options exist in the form of Subcutaneous ICDs, which were approved in 2012, and Extravascular (EV) ICDs, which were approved in 2024. Not every patient is a candidate for every type of device, so selections are made on an individual basis. -Dr. Adaya Weissler-Snir, Medical Director of the HCM Program at Atlantic Health System in Morristown, NJ

• “Genetic testing being negative doesn’t necessarily mean that no one in your family is at risk.” The probability of having a gene that explains your HCM is only 30-50% of all HCM patients. “Everything we talk about in a visit is shared decision-making” and “There’s not one right decision.” -Dr. Alejandro (Alex) de Feria, Cardiologist & Assistant Professor, University of Pennsylvania (who is also an HCM patient)

• Prior to 2020, HCM patients were told not to exercise, except for maybe golf and other sedentary sports. The LIVE-HCM Study9 resulted in the total removal of exercise restrictions,10 showing that individuals with HCM who exercise vigorously did NOT have more arrhythmias or other adverse events than the average population. In reality, those who exercised had higher quality of life and became more physically fit. -Dr. Rachel Lampert, Cardiologist & Professor, Yale School of Medicine

• Our generic drug supply chain is in crisis.11 Regulation of drug quality is currently based on self-reported data. FDA approval rigor DOES NOT EQUAL quality and safety monitoring. Growing awareness of this issue has rare bipartisan support in Washington DC. -David Light, Co-Founder & CEO of Valisure

I’ll be sharing a few additional sound bites from the meeting throughout the coming week on Notes.

Conclusion

Whew! If your brain is chock full of new information, then imagine how it felt to be in the room for a day that started early, ended late, and had few breaks. But our brains and hearts were equally full.

Attendees moved on to an evening networking event where we could share our reactions to the day’s presentations and to connect. It was wonderful to spend time in person with other HCM patients, many of whom I only knew previously from online meetings and activities. We also took the opportunity to honor Lisa’s 30 years since founding the HCMA with a tribute video, slide show, and photo book…a project I worked on with my fellow HCMA Ambassadors. Given the number of people who contributed to the project, I can’t believe we managed to keep it a secret from Lisa, who is usually all-knowing!

After the event, I still feel like I’m absorbing everything and catching up on my sleep, but my biggest takeaway is how motivational the experience was. It reinforced that I need to keep advocating, keep talking about HCM, and keep sharing my story. These activities have impact, and generations of newly-diagnosed HCM patients to come will get to have a better treatment journey as a result.

Most of all, I need to focus on my own pivotability by evolving, shifting, and adapting to whatever my journey with Hypertrophic Cardiomyopathy throws at me next.

#BigHeartBigLife

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Each issue of “What’s Her Problem?” includes questions for further discussion. Leave a comment below!

This week’s questions:

How would you rate your own skill level with pivotability? Did anything stand out to you about future diagnostic and treatment options in Hypertrophic Cardiomyopathy from this report?

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