Growing up in Williamstown, West Virginia, Greg Ruf was the picture of health.
As a teenager, he excelled in distance running and loved competition. In the spring of his senior year of high school, he was training for the state track meet when everything changed.
His heart suddenly began racing uncontrollably.
Ruf was an athlete. He was young. Heart disease was something that happened to older people, not teenagers preparing for track meets. But after a visit to the emergency room and consultations with multiple physicians, he was told competitive running should no longer be part of his future. At the time, little was known about many heart conditions, and no clear explanation was provided.
“It’s hard to explain what that felt like at that age,” Ruf has said about the experience.
Still, he refused to let it define him. He went on to college and embraced the opportunities ahead of him.
Over the next several decades, Ruf established a successful career as an entrepreneur and executive coach. He married Brenda, who would become his partner throughout his health journey. Together, they raised two sons and a daughter and created a family-centered life. To most people, Ruf appeared healthy and active. Yet behind the scenes, something was changing.
In 2003, a routine life insurance examination revealed another warning sign. Testing showed his ejection fraction, a measure of how effectively the heart pumps blood, was lower than normal. Because he felt healthy and remained active, no additional action was taken.
More than a decade later, another warning sign emerged during a visit to his allergist. His heart rate was just 32 beats per minute and irregular. The physician urged immediate medical attention. Additional testing eventually led Ruf to the Cleveland Clinic, where he received the diagnosis that explained years of unanswered questions: dilated cardiomyopathy, or DCM. He was 49.
Dilated cardiomyopathy causes the heart muscle to enlarge and weaken over time, making it harder for the heart to pump blood effectively.
As the disease progressed, Ruf faced a reality familiar to many heart patients. Medications, procedures, hospital visits and eventually an implantable cardioverter defibrillator became part of life. Through it all, he learned that living with heart disease requires resilience, faith and hope.
Then came a discovery that transformed his understanding of his family’s health history.
Genetic testing revealed that Ruf carried genetic variants linked to his condition. The finding reflected a growing understanding of the role genetics can play in heart disease. According to the American Heart Association, genetic testing can help identify inherited cardiovascular conditions and provide important information for family members who may also be at risk.
Suddenly, decades of family history began to make sense.
Several men in Ruf’s family had died from heart failure, including his grandfather, father and uncle. Previous generations never had the opportunity to understand why. Advances in science finally provided answers.
The answers led to another difficult question: What did this mean for his children? His three children underwent genetic testing, and each was found to carry the same genetic variant associated with his condition.
For a parent, the news was deeply personal. Yet Ruf also recognized something previous generations of his family never had: knowledge.
Because his children know their genetic status, they can work with health care providers to determine appropriate monitoring and follow-up care. What once would have remained a hidden threat is now a known risk that can be proactively managed.
The experience changed Ruf’s perspective. If families understood their risk sooner, he believed, they could seek care earlier and make more informed decisions about their health. He also saw the value of connecting patients and families who often felt alone in their diagnosis.
Those convictions inspired a new sense of purpose. In 2017, Ruf founded the Dilated Cardiomyopathy Foundation, a nonprofit focused on supporting people affected by the condition. Drawing from his experience as both a patient and a parent, he became committed to advancing education, advocacy and innovation for individuals and families navigating the disease. He knew there was still significant work to be done to increase awareness of cardiomyopathy and its genetic links.
Then his health took another serious turn. His heart function continued to decline. Everyday activities became more difficult. The fatigue, limitations and uncertainty that accompany advanced heart failure became part of daily life.
Ruf’s experience reflects a much larger challenge. According to the American Heart Association and leading heart failure experts, approximately 6.7 million Americans are living with heart failure, and that number is expected to increase in the coming decades.
Eventually, doctors delivered the news that he would need a heart transplant. Waiting for a donor heart required courage, patience and faith.
On July 15, 2021, he received that gift, a new heart. Ruf often expresses profound gratitude to the donor and medical teams that helped make his second chance possible. Today, that second chance allows him to spend time with Brenda, his children and his grandchildren while continuing his work on behalf of patients and families affected by cardiomyopathy.
Ruf’s story is no longer simply about surviving cardiomyopathy. It’s about what he chose to do with that survival.
“Behind every diagnosis is a person searching for hope, and behind every family affected by cardiomyopathy is an opportunity to learn, act and support one another. Genetic testing helped provide answers that had been missing from my family’s story for generations, reinforcing how important education and awareness are for patients and their loved ones. My hope is that more families will feel empowered to ask questions, learn their risk and advocate for the care and knowledge that can help shape a healthier future,” said Ruf.