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March 16, 2009
Quest for ALS cure a family mission

By Maria Lameiras

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.

Also known as Lou Gehrig’s disease, amyotrophic lateral sclerosis (ALS) kills the motor neuron cells in the brain and spinal cord, which causes the brain to lose the ability to control the muscles in the body, leading to paralysis and problems swallowing, eating and breathing. The person’s mental capacity remains intact, making ALS a cruel sentence for patients who are often otherwise healthy and active before being diagnosed.

Brian, 15, first learned about ALS while watching the 2005 Ironman Triathlon from Kona, Hawaii. After a segment on racer Jon Blais, the first person with ALS to ever complete the race, Brian told his parents, Karen and Mike Duffy, that he wanted to do something to help.

With his parents’ support, Brian began a letter-writing campaign in January 2006 and raised more than $2,200 that year. His parents ran triathlons to raise money, and his younger brother, Kevin, a golfer, sold golf balls as an ALS fundraiser. That was good, but for Brian, it wasn’t enough.

At Brian’s urging, the family organized the first annual “Run for Life 5K - A Race to End Lou Gehrig’s Disease” in 2006, and to date has raised more than $17,000 for ALS research at the Emory ALS Clinic. The third annual race is set for May 2 — coincidentally the 70th anniversary of the day in 1939 when Lou Gehrig took himself out of the New York Yankees lineup because of the disease.

Proceeds will continue to support the Emory ALS Center where medical professionals partner with the Muscular Dystrophy Association of Georgia and the ALS Association of Georgia, searching for new understanding of the illness and seeking to minimize its toll on families.

Research at the clinic focuses on basic mechanisms of motor neuron degeneration, genetics of ALS, and new experimental treatments. The clinic also provides multidisciplinary care to ALS patients and their families, focusing on independence and quality of life through state-of-the-art intervention. Together, Emory neurologists, nurses, a speech-language pathologist, occupational, physical, and respiratory therapists, dieticians, and a social worker address all aspects and stages of the debilitating disease.

“This disease is a horrific one,” says neurologist Jonathan Glass, director of the clinic. “It hits people smack in the middle of their productive lives, and it affects not only the individual, but the whole family. We have created a patient-centered approach at Emory that has been very successful.”

Now a freshman at South Forsyth High School, Brian often has to explain to classmates what ALS is when they see the “Cure for ALS” bumper sticker on the family car.

“My goal 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,” Brian says.

For more information on the 2009 Run for Life, please visit www.cureforals.com.