For an audio slideshow on amyotrophic lateral sclerosis, click here.
Inspired by two athletes who lost their lives from a devastating disease, Georgia teenager Brian Duffy and his family have raised more than $17,000 for research and programs at Emory University’s ALS Center.
Also known as Lou Gehrig’s disease, amyotrophic lateral sclerosis (ALS) causes the brain to lose the ability to control the muscles in the body, leading to paralysis and problems swallowing, eating, and breathing. Mental capacity remains intact, making the disease a cruel sentence for people who often are otherwise healthy and active before being diagnosed.
Brian Duffy, 15, first learned about ALS in 2005 after watching the Ironman Triathlon from Kona, Hawaii. That year racer Jon Blais became the first person with ALS to ever complete the race. Having said he would finish even if he had to be rolled over the finish line, Blais laid down at the finish line and “log-rolled” across under his own power as a symbol of the disease. A year later, he was in a wheelchair. Less than two years after his diagnosis, he succumbed to the disease.
After watching a news story on Blais, 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 to family and friends 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 Duffys held their first annual “Run for Life 5K - A Race to End Lou Gehrig's Disease” in 2006. To date the family has raised more than $17,000 for ALS research, donating the proceeds to the Emory ALS Center. The third annual race is set for May 2, 2009, which coincidentally is 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 Emory ALS Center focuses on basic mechanisms of motor neuron degeneration, genetics of ALS, and new experimental treatments. The Emory ALS Center 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 this debilitating disease.
“This disease is a horrific one,” says Jonathan Glass, MD, director of the Emory ALS Center and professor of neurology at Emory School of Medicine. “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. The family comes to us, and we bring all of the providers they need to them. The support that we receive from donors drives the research we are doing.”
Demand for care at the Emory ALS Center has increased dramatically since the center was named an MDA regional network clinical research center, one of only five in the country and the only center in the Southeast. Glass says volunteers, such as Karen Duffy, are vital to the center’s ability 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 that what we have here is special and is not happening anywhere else,” Glass says. “Brian’s efforts are what really started this, and he and his brother are amazing kids. They are examples of what people really can do to make an impact. With public understanding of how important this is we will get the support we need to continue.”
Now a freshman at South Forsyth High School, Brian, 15, runs cross-country and is on the swim team. He 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.
January 2009
