The co-founder of the ALS Ice Bucket Challenge is speaking to the Charlotte community about progress towards one of the most debilitating and deadly diseases of our time.
"People had heard of ALS...but they didn't really understand exactly the day-to-day and the progression and the prognosis of how the disease was," co-founder Nancy Frates said.
Frates son lives with ALS and came up with the idea after one of his friends dumped a bucket of ice on his head. His goal from the beginning was to use the challenge to reach philanthropists that could help raise money for additional research.
More than $220 million has been raised and researchers are crediting some of that money to helping fund an important scientific step -- counteracting the clump of protein TDP-43 which is found in patients.
Frates joined the Joe Martin ALS Foundation in Charlotte to speak on Tuesday evening to hundreds of people throughout the ALS community. Her message is that the challenge will not stop until a cure is found.
"Every August until a cure," Frates added.