COLUMBIA, S.C. (WIS) -People around the world are remembering the man who inspired the ALS Ice Bucket Challenge, which helped to raise hundreds of millions of dollars worldwide.
Pete Frates died Dec. 9 at the age of 34, but members of the ALS Association South Carolina chapter say the impact of his work will live on to help so many others facing the same battle.
Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis or ALS, is a progressive neurodegenerative disease, which leads to paralysis due to failing motor neurons in the spinal cord and brain. There is no known cure.
Brett Vowles is a care service manager with the ALS Association here in South Carolina. He says there are 300 people in our state currently living with ALS.
The Ice Bucket Challenge shed new light on the disease, bringing it to the forefront and the many the challenges that come with it. Vowles says one of those challenges is the expensive treatment.
“The cost of ALS can be in the hundreds of thousands of dollars if you are not insured. So, if there isn’t a private insurance or private pay or Medicaid involved, it’s very difficult to get those services covered by an insurance. So, there’s a lot of out-of-pocket costs that comes with this diagnosis,” he said.
The Ice Bucket Challenge helped to raise $200 million worldwide – $115 million of that was raised in a two-month period alone according to the ALS Association.
Frates, of Boston, was playing baseball one day and was hit in the wrist with the ball. When his injuries would not heal, he went through months of testing and in 2012 was diagnosed with ALS. As the disease progressed, he became paralyzed, had to use a wheelchair, lost the ability to talk and had to be fed through a tube – but this didn’t stop him from fighting for awareness.
His involvement with the Ice Bucket Challenge lead to the movement exploding on social media in 2014.
“The money that was raised, which was over $200 million, has gone forward to helping out hundreds of different clinical studies. We’ve been able to find five new genes that are connected with the ALS diagnosis,” Vowles said.
This discovery will help doctors determine if someone’s ALS diagnosis can be passed down genetically.
Most of the $200 million raised have helped to back research and clinical trials, but a small portion was also given to all local ALS Association chapters.