Ice bucket challenge dollars not staying local

The Florida ALS chapter has seen a nice ice-bucket challenge bump, but nothing compared to the national association.
 
"I can't dress myself, I can't feed myself," said ALS patient Doug McGuiness from his home in Lutz.
 
McGuiness needs help to do just about everything, including carefully getting into his wheelchair.
 
The former engineer, who even did work with NASA, was diagnosed with ALS almost a decade ago.
 
But he's never seen his disease get the kind of attention it is right now thanks to the ice bucket challenge campaign.
 
"I'm thankful for it because the funds that come in are going to go to research, and that's what we need," said McGuiness.
 
"This phenomenon has given them hope," said Alissa Gutierrez.
 
Gutierrez works for the Florida chapter of the ALS Association and says while they are grateful to see the national ALS Association approach $50 million in donations, those dollars don't trickle down.
 
"We are finding that most people are directing their donations to the national website simply because they are not aware there is a Florida chapter," she said.
 
The Florida chapter has collected about $88,000.
 
That's four times what they had at this point last year.
 
But they say it's just a fraction of what's needed to help local patients.
 
"A power wheelchair, which our patients need to have any quality of life and be mobile, costs around $40,000. So right now we can afford two power wheel chairs and a couple of batteries," said Gutierrez.
 
Some may be getting burned out on those videos, but not those who see and feel the effects of ALS every day.
 
"That's part of the challenge that we have to make sure every day is a good day," said McGuiness.
 
You can learn more about the Florida ALS chapter at www.alsafl.org .
 

 

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