Ice Bucket Challenge co-creator dies, Minnesotans hopeful of new research

Pat Quinn, co-founder of the ALS Ice Bucket Challenge, died over the weekend as he battled the progressive neurodegenerative disease, according to the ALS Association.

The Ice Bucket Challenge was a social media sensation where people would challenge one another to pour ice water over their heads to raise money for ALS research.

“He’s a force of nature, and one of the nicest human beings I’ve ever met,” said Jennifer Hjelle, Executive Director of the ALS Association of Minnesota, North Dakota, South Dakota Chapter, who knew Quinn. “What he has done for the ALS community through his advocacy and just awareness that he has brought cannot be understated.”

The ALS Association said more than $115 million dollars was raised by the Ice Bucket Challenge donations in the US.

“Five new genes have been linked to ALS due to the Ice Bucket Challenge,” Hjelle said. “I think is important for people to understand is all of that money that came in then, it’s really starting to pay off now.”

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, but has no cure yet, according to the ALS Association.

“I think we’re really close to some breakthroughs for some people with ALS, it’s a complex disease,” said Dr. Sam Maiser of Hennepin Healthcare’s ALS Center of Excellence in Minneapolis.

The ALS Center of Excellence helps patients and their families living with ALS, while also conducting research on the disease.

Maiser said the rate of research and clinical trials for ALS have really accelerated in the field in the last five years.

“I think we are close for some people for real meaningful treatments," Maiser said.