Lindsay Davis leads the way for heart safety education

Lindsay dedicates her life to heart education and saving lives.

Lindsay Davis, keynote speaker at the Akron Children’s Rare Disease Day event on March 5, planned on being a professional dancer. But a serious heart condition derailed that dream and turned her into an advocate for saving young athletes’ lives.

Lindsay’s symptoms and the long wait for the right diagnosis

As a teenager growing up in Lakewood, Ohio, Lindsay’s heart fluttered while dancing, running track or participating in gym class. She felt fatigue, dizziness and chest pain – and she even passed out. Her coaches and dance instructors thought she wasn’t eating enough or that she was dehydrated.

“I was quite scared and confused,” Lindsay said. “I put my trust in the adults around me, but at the time, they didn’t have the proper training to understand that sometimes children conceal heart conditions that can show symptoms upon exertion.”

Lindsay’s mom, Fay, took her to countless doctors. They misdiagnosed her with asthma, chronic fatigue and other conditions she didn’t have. After a particularly scary episode of collapsing at home, she went to the hospital. A cardiologist diagnosed Lindsay with hypertrophic cardiomyopathy (HCM), a condition that causes the heart muscle to enlarge and weaken. HCM can lead to sudden cardiac arrest and is a top cause of sudden cardiac death in young athletes.

Lindsay wrote a children’s cardiology book that is loosely based on her life as a ballet dancer.

A new path

At age 17, Lindsay had to give up her dreams of dancing. “I was a typical angsty teenager who was told I couldn’t dance anymore, so I pushed back a lot,” she recalled. “The doctors had a hard time getting me to take my heart medications.”

After Lindsay collapsed a second time, it was the wake-up call she needed. “That’s when I realized just how serious this all was – and all these things that were being ‘pushed’ on me were to protect me and keep me safe,” she shared. “I had surgery to have an Implantable Cardioverter Defibrillator (ICD) put in my chest, which reduced a lot of my fears.”

An ICD monitors heart rhythms and sends little shocks when needed to reset fast heartbeats that can be life-threatening. Lindsay calls it a “little emergency room” in her chest.

Fay models the way

It took time for Lindsay to come to terms with her diagnosis and the loss of dance. She looked to the person who was always there: her mom. “She modeled such strength and fortitude to me,” Lindsay said. “Even though she worked full time, drove me to all my dance classes and rehearsals, and took care of me when I didn’t feel well, she still had time to volunteer for causes that helped the less fortunate. If she had time to do all that, why couldn’t I deal with a heart condition and still give back?”

Lindsay on Capitol Hill in Washington, D.C.

Lindsay’s Law

Inspired by seeing a deaf woman compete in a beauty pageant on TV, Lindsay wanted to bring awareness to HCM. Fay hired a pageant coach who taught Lindsay how to walk and spin on stage. The next thing Lindsay knew, she earned the Miss Ohio 2011 crown.

That platform led her to hold meetings with Ohio legislators, sharing ideas on how to share vital heart education throughout youth and school sports. The result: Lindsay’s Law passed in Ohio in 2017. Athletes under age 19, parents and coaches now get yearly education on the warning signs of sudden cardiac arrest.

“We improved Lindsay’s Law a year ago by making sure each school has an automated external defibrillator near where children play sports,” she said. “We passed it in Ohio and are now working to make sure all 50 states have this.”

Lindsay worked for almost a decade on a national law called the HEARTS Act, which President Joe Biden signed. After Buffalo Bills player Damar Hamlin collapsed on the field and received lifesaving care in 2023, she began working with the NFL to help states improve laws about sudden cardiac arrest.

Lindsay also advocates for family members to get screened when another close relative gets an HCM diagnosis. “After my diagnosis, my dad, 2 of my brothers, and several aunts and uncles were diagnosed with HCM,” she said. “Two of them found out tragically, which is why I am a huge proponent for screening family members once you have a confirmed diagnosis for these genetic conditions. Once we know what the root problem is, we can find ways to keep people safe.”

Lindsay with Presidents Bill Clinton and Joe Biden. She worked for nearly a decade on a national law called the HEARTS Act, which President Joe Biden signed.

Life today

She continues to battle the same symptoms she’s had since childhood, although the ICD will protect her from sudden cardiac arrest. Some days, she can take a long flight to Australia and walk across the Sydney Harbour Bridge. Other days, she can’t walk across her bedroom without feeling out of breath.

Lindsay splits time between Ohio and New York, dedicating her life to advocacy. She founded a nonprofit organization called Patients: The Heart of It All and wrote a children’s cardiology book that is loosely based on her story as a ballet dancer. She writes op-ed columns for major publications and sits on patient advisory committees for companies developing therapies to treat heart-related conditions. “I feel like there’s a reason I am still here after such scary things happened to me,” she said. “I want to spend the rest of my life helping others and figuring out that reason.”

Rare Disease Day at Akron Children’s

Lindsay is the keynote speaker at the March 5 event – which helps people learn about rare diseases and how to support patients. Families, caregivers, health care workers and researchers are all welcome.

“Rare does not mean invisible or forgotten. These communities deserve urgency, innovation and a seat at the table,” Lindsay offered. “I would encourage families of kids with rare diseases to keep telling their stories. Their personal experiences are the biggest catalyst for change.

“Rare disease may shape your family’s journey, but it doesn’t define your child’s potential or the impact of your love. Having the most supportive mom through my own diagnosis helped me see that you don’t have to be perfect or have all the answers. What your child needs most is already there: your care, your courage and your willingness to keep going.”