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Hundreds will draw attention to a killer
By NEGAR TEKEEI
© St. Petersburg Times, ST. PETERSBURG -- Six years ago Tommy Wall built his house. Today he doesn't have the energy to cough. Wall, 49, was diagnosed with amyotrophic lateral sclerosis four years ago. He was told he had "Lou Gehrig's disease" after more than a year of using a cane, crutches and a wheelchair because his muscles had deteriorated so much he could no longer walk. Wall, a former lighting consultant for a fiber optics manufacturing company, sat in a wheelchair in the office of his Tampa home Monday, hooked up to a ventilator that controls his breathing and, as a result, his speech. While his body has worsened to the point where he spends all but six hours of his day in bed, Wall's mind is alert and he has a lot to say about the illness that has taken over his life. "It's a disease that eventually totally debilitates its victims," he said. "But what choice do you have? You can either quit or move on." Move on it is. But, Wall says, because the lifespan of a person with ALS is still about two to five years, little has been donated to specific research for ALS. Wall, his wife, Beverly, and more than 800 others who hope to reverse that trend and attract donations to their cause will join Saturday in Florida's first-ever "Walk to d'feet ALS" at Carillon Office Park. The fundraiser is sponsored by the Florida chapter of the ALS Association. Participants in the 3-mile walk have raised pledges and donations. The state chapter hopes to collect $150,000, most of which to help patients like Wall and their families, said Holly Walker, executive director of the chapter. ALS, discovered in the 1860s, is a progressive neurodegenerative disease that attacks nerve cells in the brain and the spinal cord. It became known as "Lou Gehrig's disease" after the famous baseball player, who had to retire in 1939 when the illness kept him from playing. Scientists have yet to find what causes the disease, which has been found in people in their early 20s to much older. In the advanced stages, a person is left unable to walk, eat, speak or even breathe. Joel Reedy, a University of South Florida professor of marketing and grand marshal of the walk, has had ALS for 20 years. Throughout that time, he says, little progress has been made in finding a cure because there are only 30,000 people living with ALS in the United States. "It doesn't get much coverage by the media and it doesn't get much support by the government," he said. "It is something we have to do ourselves. We, people who are affected by it, have to take up the sword ourselves." Researchers need money and time, said Beverly Wall. "Especially now, with all the stem cell research, it could be your dollar that finds the cure," she said. "Nobody should have to suffer through this." Where and whenHundreds of people have signed up to walk at Carillon Office Park this Saturday to raise money to fight amyotrophic lateral sclerosis. The first-ever "Walk to d'feet ALS" will start at 9 a.m. Registration is at 8 a.m. Participants in the 3-mile walk are asked to raise pledges and donations. For information about the walk, call (727) 579-9511.
 © 2006 • All Rights Reserved • St. Petersburg Times
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From the Times South Pinellas desks |
