Running strong for ALS

Kevin and Brian Duffy

Kevin (left) and Brian Duffy use their love
of sports to raise funds for Emory's ALS

After being inspired by two athletes cut down by a devastating disease in their prime, teenager Brian Duffy and his family have raised more than $17,000 for research and programs at Emory’s ALS Clinic.

Brian first learned about amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, in 2005 after watching the Ironman Triathlon from Hawaii. That year racer Jon Blais became the first person with ALS to complete the race. A year later, Blais was in a wheelchair. Less than two years after his diagnosis, he died.

At the end of a news story on Blais, Brian told his parents, Karen and Mike Duffy, that he wanted to help. With their support, he began a letter-writing campaign in 2006 and raised more than $2,200 that year. His parents ran triathlons, and his younger brother, Kevin, a golfer, sold golf balls to raise money. But for Brian, it wasn’t enough.

At his urging, the family held its first annual “Run for Life 5K–A Race to End Lou Gehrig’s Disease” in 2006. The third annual race was May 2, 2009—the same day that Lou Gehrig took himself out of the New York Yankees lineup in 1939 because of the disease.

All proceeds support the Emory ALS Center, which partners with the Muscular Dystrophy Association (MDA) of Georgia and the ALS Association of Georgia. Research at the clinic focuses on basic mechanisms of motor neuron degeneration, genetics of ALS, and new experimental treatments. The clinic also provides care to ALS patients and their families, focusing on independence and quality of life.

Demand for care has increased dramatically since the center was named an MDA regional network clinical research center, one of five in the country and the only one in the Southeast. Jonathan Glass, the clinic’s director, looks to volunteers like Karen Duffy to provide emotional and social support for ALS patients and their families.

“These volunteers provide a link to the community and let people know how important this center is and what we have here is special and not happening anywhere else,” says Glass. “Brian’s efforts are what really started this, and he and his brother are amazing kids. They exemplify what people really can do to make an impact.”

Now a rising sophomore at South Forsyth High School north of Atlanta, Brian runs cross-country and is on the swim team. He often has to explain ALS to his classmates when they see the “Cure for ALS” bumper sticker on the family car.

“My goal,” he says, “is to have ALS become as well known as other diseases, so people will become more aware of it and do more to help find a cure.”—Maria Lameiras

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Emory Medicine - Spring 2009

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