Remember the Ice Bucket Challenge that took over social media in 2014? We are now starting to see challenge’s ripple effects turn into waves.
The ALS Association confirmed the Food and Drug Administration approved the first treatment for amyotrophic lateral sclerosis, or ALS, that was funded by this challenge. The association reported $2.2 million raised from the social media trend was used in the development of AMX0035.
The association explains funds were also used to petition the FDA to approve the treatment during its third trial phase.
Calaneet Balas, president and CEO of the ALS Association,explained, “This is a victory for the entire ALS community, which came together to advocate for early approval of AMX0035. We still have a lot of work to do to cure ALS, but this new treatment is a significant step in that fight.”
Larry Falivena, who was diagnosed with ALS in 2017 and has been appointed to the ALS Association Board of Trustees, says the approval of AMX0035 is “significant” to those affected either directly or indirectly by the disease.
“The ALS community has proven that our advocacy can impact decisions that are being made about our health. We need new treatments as quickly as possible if we are going to turn ALS into a livable disease and eventually cure it,” he said.
More than 17 million people participated in the Ice Bucket Challenge in 2014 and that raised over $115 million for the ALS Association. The challenge was championed by Pat Quinn and Pete Frates, both of whom were diagnosed with ALS. Frates died in 2019 and Quinn passed away the following year.