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D'feet with your feet
Robbie Billingsley was one of those active people. As a criminal defense and family court attorney, her life was very active. Two years ago, however, she was diagnosed with amyotrophic lateral sclerosis, also know as ALS, or Lou Gehrig's disease. "I started losing my ability to use my right hand," she said. "After a series of many, many, many tests, I was officially diagnosed with ALS on September 28, 2005." Billingsley immediately got involved with the ALS association. "When you have a disease with no known cause and no prognosis except you will die, it helps to talk to other people." On Aug. 11, the Upstate NY Chapter of the ALS Association will host the fourth annual Walk to D'Feet ALS in Delaware Park. The three-kilometer walk is open to the public with funds raised and donated to the ALS Association.
wheelchair- bound, will be an honorary chair for the event. "I'm extremely flattered and totally delighted," she said. "One of the problems you have if you were an active person and go to a sedentary lifestyle is that you miss people, and this is a wonderful occasion to get out and see people. I'm very grateful." The Walk to D'feet ALS is the primary fundraiser of the association, which is run completely on donations, said Jeanine Huber, development coordinator for the Upstate NY Chapter. "This is the national signature event and there are 150 country-wide," she said. "The financial cost to someone with ALS can be up to $200,000 a year, and the association helps to defer those costs." Services that are provided by the association include support groups, caregiver services, assistance with health insurance and Medicare, and a loan closet, from which people stricken with the disease can receive equipment such as wheelchairs. Approximately 80 percent of the proceeds from the walk will go to patient services, with the other 20 percent, along with 20 percent of the funds raised at all of the other walks nationally, going to research.
The life expectancy of an ALS patient is two to five years from the time of diagnosis. "All you know is that you're dying," Billingsley said. "It paralyzes all of your muscles and you eventually die because your breathing muscles are paralyzed." This is the fourth year that the walk will be held in Buffalo and the eighth year nationally. The event has raised over $50 million since its inception. "It's a lesser-known disease, but awareness is growing every year," Huber said. She also noted that the goal for this year's walk is $50,000 and 300 walkers. The association also provides services for family members of individuals with ALS. Jennifer Sanfilippo's mother was diagnosed with the disease last July. "When she was first diagnosed, I had no idea what to do," she said. "The association has been a great help in every aspect." Sanfilippo gathered friends and family for the walk last year and is continuing to reach out to the community with her primary goal being awareness. "The disease is more prevalent and it's good to know that it exists because the sooner people know about it, the sooner they can find a cause and a cure," she said. "It takes lives and it's very serious and should be known." Billingsley agrees. "I lost my mother to ALS and I have a 32-year-old son," she said. "I want it cured before he gets it." Registration will begin at 10 a.m., with the opening ceremony and walk at 11 a.m. The walk is wheelchair- and stroller-accessible. The ALS Association also holds a monthly support group in the Buffalo area at 7 p.m. on the third Monday of every month at the Snyder Library, 4622 Main St., Amherst. For more information about the walk, call 866-499-7257 or visit www.alsaupstateny.org. e-mail: etaufa@beenews.com | ||||||||||||||||||||||||||||||||||
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