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Ice water challenge gives voice to previously silent disease

Ice water challenge gives voice to previously silent disease


BLOOMINGTON — After watching people across the country do it, Nancy Adkins knew it was her turn.

So, Monday night outside her Sibley home, she and her son, Bryan Rollins, had buckets of ice water dumped on their heads, then challenged friends to do the same or donate $100 to the ALS Association — or both.

The ice water challenge that is soaking the nation has made it to Central Illinois.

But this challenge was different. Adkins, 55, was sitting in a wheelchair, couldn't verbally articulate her challenge and couldn't dry herself off.

She has ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease.

"I am so grateful for the awareness and donations being made for ALS," Adkins said in a statement emailed to The Pantagraph on Tuesday. Her disease has progressed to the point that her speech is no longer understandable and she has limited use of her legs and arms.

"Maybe the money can bring scientists closer to answers about this horrible disease," she wrote.

She and her husband, Lonnie Adkins, noted that since her diagnosis in 2004, friends have died of ALS. The average life expectancy of a person with ALS is two to five years after diagnosis.

"I believe God is using me, that He is giving me strength to keep going," she wrote.

Yes, buckets of ice water are giving a voice to a previously silent disease.

ALS is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cords. When cells die, voluntary muscle control and movement also die. Patients become paralyzed, but their minds remain sharp.

"Nancy is trapped in her body," said her husband. "But her mind is everything it's ever been."

There is no cure. Only one FDA-approved drug extends patient survival by two to three months. Eventually, patients lose the ability to eat and breathe.

Because the disease affects relatively few people (30,000 Americans have ALS), robs people of their ability to talk and kills people within a few years, ALS has had a lower profile than other diseases, explained Julie Sharpe, executive director of the ALS Association Greater Chicago Chapter that covers most of Illinois.

But after friends and family of former Boston College baseball player Pete Frates, a 29-year-old with the disease, began the ice bucket challenge, its gone viral and the donations are rolling in.

"It's absolutely amazing," Sharpe said. "We've never had this level of awareness."

Here's how it works. People have a video taken of themselves with a bucket of ice water being poured on their head and then challenge others by name to do the same within 24 hours, or donate money to the ALS Association — or both. The video is posted to social media using hashtags #IceBucketChallenge or #StrikeOutALS.

The association has received $22.9 million in donations since July 29 — compared with $1.9 million during the same period last year. Donations have come from existing donors and 453,210 new donors, said Sharpe. 

Among the many Bloomington-Normal challengers have been high school football teams and Illinois Wesleyan University President Richard Wilson, who took the challenge Tuesday night during the New Student Convocation.

Wilson said he took the challenge to support the fight against the disease and in honor of his friend and mentor, former IWU President Robert Eckley, who died of ALS in 2012.

For the Adkins family, "It's been a horrible ride," said Lonnie Adkins, "but we're still living with it.

At the same time, "We are just ecstatic about all the awareness this is bringing," he said. "Right now, Nancy is smiling from ear to ear."


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