Running Toward Awareness: Sydney McLaughlin-Levrone on Life With HCM

For more than two decades, hypertrophic cardiomyopathy (HCM) quietly shaped life for the McLaughlin family, long before it had a name or a clear road map. Willie McLaughlin was diagnosed with HCM in his mid-20s, years before symptoms appeared and decades before a heart transplant ultimately saved his life.

Now, Willie and his daughter, Olympic gold medalist Sydney McLaughlin-Levrone, are sharing their family’s journey through On Track with HCM, a disease-awareness program developed in collaboration with the HCM patient advocacy community and Cytokinetics. Through a dedicated website and eight original videos, they reflect on the physical, emotional and family-wide impact of living with a genetic heart condition.

Their story is one of resilience, awareness and advocacy, aimed at helping others recognize symptoms earlier, seek screening and feel less alone while navigating life with HCM.

For families who may be hearing about HCM for the first time, can you share what HCM is and how it first showed up in your lives?

Willie McLaughlin: Absolutely. HCM stands for hypertrophic cardiomyopathy. It’s a genetic heart disease that causes the walls of the heart to thicken. I found out I had HCM quite by accident at age 25, when a coworker encouraged me to get a routine physical. During that exam, my doctor did an EKG, which came back abnormal. I was referred to a cardiologist, who ran further tests, including an echocardiogram. That’s when they saw a slight thickening in the lower part of my heart and explained that I had cardiomyopathy.

At the time, I was told there wasn’t much that could be done — it was genetic, and I would just need to monitor it. I had no symptoms back then. I had recently finished college, was a competitive athlete and was in great shape. It wasn’t until about 15 years later, when I was close to 40, that I began experiencing symptoms like rising blood pressure, shortness of breath, fatigue and arrhythmias.

Those symptoms progressed over the years. By my late 50s, the disease had advanced to the point where I needed a lifesaving heart transplant. One of the most surprising things about HCM is how common it is: About one in 350 Americans has it. For many years, I kept my diagnosis mostly to myself. But as my children got older and I learned that my brothers also had HCM, I became more open about it. The disease had a profound effect on my family, especially as it increasingly limited what I could do.

What was it like living with HCM for so many years before your transplant, and what do you wish you had known earlier?

Willie McLaughlin: It was very challenging. Over time, the fatigue and arrhythmias really limited my energy. But I had four kids, I was working full-time, commuting between New Jersey and New York, and life didn’t stop just because I was exhausted. I would come home from work and still go to soccer practice or help with family responsibilities.

That’s why we’re so excited about the On Track with HCM campaign with Cytokinetics. It provides resources that simply didn’t exist when I was first diagnosed. The program includes eight video modules where Sydney and I talk honestly about how HCM affected our family and how we navigated it together. There are also links to advocacy groups and educational resources, giving patients a place to turn. When I was diagnosed, there was no internet and very little information. I was managing symptoms without truly understanding the disease.

Sydney, how did learning about your father’s diagnosis change how you thought about your own health and risk?

Sydney McLaughlin-Levrone: For many years, my dad didn’t really talk about his HCM with us. As a parent, he wanted to protect us and not place that burden on us. That’s something we discuss in the campaign — the mental side of living with a chronic condition and how important it is to open up to family, friends and your health care team.

As his daughter, it made me realize how important it was to get tested and understand my own risk, as well as what it could mean for my siblings and future children. Seeing my dad go through this journey, and hearing how isolated he felt at times, really motivated me to be part of this campaign. We want people to know they’re not alone.

Willie McLaughlin: When I was first diagnosed, I was completely fit and symptom-free. It took years before symptoms appeared. That means there are likely many active, healthy people walking around with HCM who don’t know they have it. Awareness and screening are so important.

As a family, how did you support one another through uncertainty, treatment decisions and ultimately a heart transplant?

Willie McLaughlin: I’ll admit, I didn’t share much with my kids until they were older. I didn’t want to burden them. But once we talked openly, it brought us closer. It helped us value one another and appreciate life more. As adults, my kids rallied around me, and that support meant everything.

Sydney McLaughlin-Levrone: The more we learned, the better we could support him. When your support system understands the lifestyle changes — diet, activity, rest — it makes a huge difference. You’re not navigating it alone.

Willie McLaughlin: And my wife played a huge role. She made sure I stayed on track with healthy habits, even when I didn’t always love it.

Sydney, are there lessons from elite athletics that helped you support your dad?

Sydney McLaughlin-Levrone: Definitely — teamwork is a big one. You need a team around you. Resilience matters, but so does knowing when to ask for help. We talk a lot about the mental side of this journey. As athletes, we’re taught to push through discomfort, but sometimes the healthiest choice is to slow down, rest and lean on others.

Willie McLaughlin: As an athlete, you learn to adapt to discomfort. With HCM, I adapted to each “new normal.” Sometimes doctors would say how severe things looked, but I didn’t always feel that bad because I had adjusted over time.

What does On Track with HCM hope to change for patients and families?

Willie McLaughlin: Our goal is awareness — helping people understand what HCM is, how it progresses and why screening matters. Many people may have symptoms but don’t know what’s causing them. We want them to work with their care teams earlier and have better outcomes.

Finally, during American Heart Month, what message would you leave patients and caregivers?

Willie McLaughlin: I’d encourage people to visit OnTrackWithHCM.com to learn more and see our story. And I’d say diet, exercise and staying engaged in your health matter, even when you’re tired.

Sydney McLaughlin-Levrone: I’d say knowledge is power. Sometimes you don’t know what you don’t know. This campaign is about giving people information, support and reassurance, for themselves and their families.

This transcript was edited for clarity.