The ALS Ice Bucket Challenge has gone viral on social media, raising awareness and donations. Another fundraising activity comes to St. Cloud on Sept. 13: the Walk To Defeat ALS at Eastman Park.
Standing in his Litchfield yard in front of a video camera, Jason Tibbits proceeds to get a bucket of ice water dumped on him by his wife and two sons.
The same act has been done countless times across the world as the ALS Ice Bucket Challenge has gone viral. Former president George W. Bush, Gov. Mark Dayton, and pop stars Justin Bieber and Justin Timberlake are among numerous public figures who have completed the challenge.
"It's mind-boggling how it's blown up," said Tibbits, who was challenged by his cousin's wife. "It really shows the power of social media. It's a phenomenon."
For Tibbits, the social media awareness campaign for ALS — commonly referred to as Lou Gehrig's disease — hits close to home.
Tibbits' mother was diagnosed with ALS in December at the Mayo Clinic.
He's raised more than $2,500 for the St. Cloud Walk To Defeat ALS on Sept. 13. The 10 a.m. event starts at Eastman Park.
"The awareness of ALS has just exploded," said Tibbits, who will walk with family and friends as part of Team Sandra Jean. "Not everybody knows ALS. People have gotten much more in tune."
The challenge was started by former Boston College baseball player Pete Frates, who has ALS.
During the first three weeks of the viral Ice Bucket Challenge, the ALS Association announced it had raised $22.9 million. During the same span in 2013, the group raised $1.9 million.
"It's sort of silly, but it is significant for people living with the disease," said Jennifer Hjelle, the executive director of the Minnesota/North Dakota/South Dakota ALS Association chapter. "Their stories are being told."
ALS is a neurodegenerative disease that disrupts contact between the brain and muscles in the body.
Patients lose mobility within a two- to five-year period. They eventually become paralyzed and lose the ability to breathe as respiratory muscles cease to function.
"It's a difficult diagnosis," Hjelle said. "A lot of support is needed for people living with it."
The ALS Association engineers adaptive equipment for patients.
It also helps fund research on cures. There's currently only one FDA-approved ALS medication.
Tibbits said a patient without insurance would pay about $2,000 a month for medication.
But Hjelle said researchers are finding breakthroughs in recent studies.
"This attention cannot come at a better time — the excitement in ALS research has grown exponentially," Hjelle said. "They are having success in identifying various genes in ALS research. It's giving them clues and pathways to a potential treatment.
"Now that we have had a boost in financial support, we can really accelerate this research."
And it's all thanks to the silly ALS Ice Bucket Challenge.
"My mom has been truly humbled by this with everyone doing the ALS Ice Bucket Challenge," Tibbits said. "It is just humbling to see the love and support out there."
