Rare on the Red Carpet: James Kelly for Krabbe Disease

February 17, 2015

by Hannah Medaugha

With Super Bowl XLIX excitement still in the air, it is easy to forget that football’s megastars are real people, too. Many of this year’s Super Bowl standouts–Tom Brady, Malcolm Butler, Russell Wilson–have longstanding connections with many remarkable charitable organizations.

One such outstanding athlete with more on his mind is Jim Kelly, a retired NFL quarterback (Buffalo Bills 1986-1996) with four Super Bowls under his belt. In addition to his hall-of-fame worthy abilities, Kelly is known nowadays for his charitable works and dedication to a particular rare disease community.

Kelly’s son, Hunter James Kelly, was diagnosed with globoid-cell leukodystrophy shortly after birth. Also known as Krabbe disease, this condition is a rare, often fatal degenerative disorder that affects the myelin sheath of the nervous system. Hunter succumbed to the disease in 2005 at only eight years of age.

Kelly has become one of Krabbe disease’s most outspoken advocates. His work on behalf of the Krabbe community has increased awareness of the disease, which affects approximately one in 100,000 births. In his son’s honor, Kelly founded a non-profit organization in 1997 called Hunter’s Hope. In addition, Kelly founded the Hunter James Kelly Research Institute at the University of Buffalo in 2004, which is dedicated to the study of myelin and its associated diseases.

Kelly also incorporates his football past in fundraising efforts for leukodystrophy: through the Jim Kelly’s Every Score program, football fans pledge a dollar amount per point that the Buffalo Bills score, to be donated to Hunter’s Hope. After each game, fans may fulfill their pledge for the opportunity to win prizes.

Finally, Jim and his wife Jill founded the annual Hunter’s Day of Hope. This event, held on February 14 (the birthday of both Jim and Hunter Kelly), encourages families to gather together in celebration of their children.

This Valentines Day, please consider celebrating Hunter’s Day of Hope with your families. Spend time with your children, and maybe even toss a football around. Learn more about the foundation here. 

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