WASHINGTON — It’s nearly impossible to sign onto Facebook without seeing dozens of friends and family members taking on the Ice Bucket Challenge to raise awareness and money to fight Amyotrophic lateral sclerosis, also known as ALS.
But beyond the viral videos, the effort is changing the reality of those suffering from the disease in and around Washington.
Carolyn Wolcott, a 64-year-old Annandale resident, was diagnosed with ALS in 2011.
“I am currently in a wheelchair; I can’t walk at all. I’m having a little trouble with my hands, but very fortunately, I am still able to talk and breathe and swallow,” she says.
It took doctors more than a year to determine Wolcott had ALS, since her symptoms were difficult to diagnose. That’s not an uncommon experience, she says.
“It’s an overwhelming disease. It’s so debilitating, and so unique to each person. You know, some people start in the legs; other people start in the arms, and other people, they can’t swallow or talk. It almost seems like it’s not one disease — and yet it is,” she says.
Seeing so many people take interest and learn more about her disease through the Ice Bucket Challenge is inspiring, Wolcott says.
“A lot of people — even my friends who knew me for years and know I have ALS — I was contacted by them and they’d say, ‘I had no idea it was a fatal disease. I knew your brain wasn’t communicating with your muscles, but I didn’t know it was going to kill you, Carolyn. I had no idea,'” she recounts.
The local ALS chapter advocates for more than 600 patients in the D.C./Virginia/Maryland area.
The chapter expects the campaign will encourage many more to come forward who were otherwise unaware of the free services offered to counsel and support patients and their families, says the chapter’s executive director, Judy Taylor.
While Wolcott can’t take part in the Ice Bucket Challenge, given her physical health, she says she’s raising money for her third year in the upcoming Walk for ALS. She does not, however, discount the impact the seemingly silly online campaign is generating.
“Hopefully this will help it turn the corner and get the recognition it requires in order to get research funding,” she says.
While organizers could not quantify the amount raised in the last few weeks, the Metro ALS chapter says it has been significant.
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