ALS Patients Hope Ice Bucket Challenge Flows On
The Chilling Challenge continued...
According to the ALS Association, the organization that’s been the beneficiary of all those ice bucket challenge donations, they’ve received almost $80 million so far -- 32 times as much as they’d raised over the same time frame last year. That money has come from 1.7 million new donors.
“It’s had a spotlight, so everybody knows about it now,” Jerome says.
And though he knows people will eventually tire of all the hype, he’s doing his part to keep the scheme going.
While most people who do the challenge go on to dare up to three more to do the same, Jerome challenged 15 others.
“It’s really about bringing awareness and money, and not really the bucket, you know what I mean?” he says.
Other people with ALS agree.
'We Want This Money Spent on Research'
Ted Harada, age 42, from McDonough, GA, was patient No. 11 in the same stem cell trial Jerome participated in.
His results were so good that they’ve baffled his doctors. Before the trial, Harada was experiencing the steady decline in strength and muscle control that’s typical of the disease.
But after receiving infusions of neural stem cells in his spine, he was able to get rid of his cane and walk on his own. The grip strength in his hands doubled.
Now, months after the surgeries, he says he’s not cured, but his deterioration has greatly slowed.
“It used to be every month they could measure new weakness. Now it’s every 4 or 5 months,” he says.
No other people in the trial had such dramatic results. Researchers have repeatedly cautioned other patients not to make too much of Harada’s case.
But Harada wants the world to know that his results were real and measurable -- the result of expensive, cutting-edge science.
He would like the same opportunity to be available to others, and he hopes the ice bucket challenge can help with that.
“ALS hasn’t been in the public psyche this much since 75 years ago when Lou Gehrig announced he was retiring because he was dying from ALS,” Harada says.
“Now we just have to be smart as a community and make the mandate clear that we want this money spent on research,” he says.