Ice Bucket Challenge helped fund ALS breakthrough

- Remember the ALS Ice Bucket Challenge that took the internet by storm a few summers ago? The money raised through that campaign, which had people dumping buckets of ice-cold water over their heads, helped fund a breakthrough in ALS research, the ALS Association announced Monday.

The study, funded by donations from the Ice Bucket Challenge, helped identify a new gene researchers believe is one of the most common genes that contributes to ALS. Only 10 percent of ALS cases are genetic, but researchers believe genetics likely play a role in a larger percentage of ALS cases.

ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. As the disease progresses, most people lose the ability to initiate and control muscle movement, often leading total paralysis and death within two to five years of diagnosis, according to the ALS Association.

The Ice Bucket Challenge-funded project, Project MinE, was the largest-ever study of inherited ALS, involving over 80 researchers in 11 countries.

“Now we are seeing the breakthrough of that research and what hope it brings to us. that something might be done,” says Steve Lufkin. “ And I might see something in my lifetime.”

Lufkin was diagnosed with ALS two years ago. The neurodegenerative disease affects nerve cells in the brain and spinal cord  robbing people like Lufkin of control of his muscle movements.

 “Every day, every week, every month, becomes a new normal,” say Lufkin.

This week researchers revealed some success in identifying a gene called NEK1 which for the first time is a  target toward finding a cure. 

“The fact that we had research that was ready to be funded., that  we could accelerate with these funds was critical. That was really the reason this gene was discovered,” says Jenniver Hjelle executive director of the ALS Association of Minnesota.  .

 As Hjelle explains ProjectMine has been the largest study ever of inherited ALS involving 80 researchers across 11 countries. Only 10 percent of ALS cases are genetic, but researchers believe genetics likely play a role in a larger percentage of ALS cases.          

“To have something to shoot at,  have some sort of target you can find,” says Lufkin. “I think that's the hardest  part of the disease its been kinda a shot in the dark.”

Thanks to those ice bucket challenges Hjelle was also able to eliminate local  waiting lists for people needing equipment to live independently for as long as possible.

“Those were the best calls our team has ever made,” says Hjelle. “To say I know you have been waiting for this, we are purchasing you one, it will be there tomorrow.”

Lufkin knows there is still a lot of research that needs to be done. The ALS Association contines to raise funds for research under a new campaign called Every Drop Adds Up. But to those who poured ice water., funds., and awareness toward ALS Lufkin says is forever grateful.

“What more can you say but thank you,  for everyone to give us hope.


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