In the midst of frozen February, it might be hard to remember those scorching hot days when the Internet was flooded with videos showing people pouring buckets of ice water over their heads to benefit the fight against ALS.
But Clay Ahrens of Falcon Heights has no such trouble recollecting those scenes.
Thanks to the money raised by the ALS Ice Bucket Challenge, the 45-year-old husband and father of two who lives with the debilitating and often quickly fatal disease, also known as Lou Gehrig’s Disease, now has a power scooter to help him get around. And he wasn’t the only one who got help.
In fact, record fundraising spurred by the first year of Ice Bucket challenges eliminated the waiting lists for all kinds of assistive devices designed to help people with ALS live more active lives.
Ahrens, who was diagnosed with the disease a year ago, used his scooter to go to the State Fair.
“Now,” he said smiling as he talked from his sunlit living room, “I am just waiting for the weather so I can drive around the neighborhood.”
The Ice Bucket Challenge began with three young men on the East Coast who are living with ALS, said Jen Hjelle, executive director of the ALS Association’s Minnesota, North Dakota and South Dakota chapter. They started it to spur awareness and raise money for research. But it quickly gathered momentum as teenagers, college students, football teams, office groups, police and firefighters and others took to YouTube and other social media to join in the fun.
Thanks to the viral popularity of the online videos of people dumping ice water over their heads, money started pouring in. In total, the ALS Association raised $115 million last year. The local chapter, meanwhile, raised $300,000 more for research than it ever has before — or about three times its usual amount.
“I don’t think anybody could predict the difference this has made,” Hjelle said.
In past years, people with ALS waited months for walkers, scooters, special mattresses and feeding devices that can help them continue living what Hjelle called “their best lives.” The Ice Bucket money enabled all who need a device to get one free of charge.
“Those were the best phone calls that our staff got to make, to tell them ‘You’re no longer on the waiting list,’ ” Hjelle said.
Steve Lufkin, a math teacher at Henry Sibley High School in Mendota Heights who was diagnosed with ALS about a year ago, said that raising so much money has made a significant difference in the quality of life for many. It also helped to boost research to slow or stop the disease, allowing the nonprofit ALS Therapy Development Institute to expand a study from 20 participants to 300 — one of whom is Lufkin.
“That is a huge thing,” said the 48-year-old.
The folks at the ALS Association are working on a sequel, although officials say it may be difficult to match the energy and excitement of the original.
About 500 people are served annually by the regional chapter, Hjelle said, and about 30,000 nationally. The list never really grows. As new patients are added, about the same number die.
A new perspective
Ahrens, meanwhile, knows his days are numbered, that his life with Jana, his wife of 21 years, may be over two, or four, or six years from now, and that he will probably not see his 15-year-old son or 12-year-old daughter grow to finish college, start careers, marry or have children of their own.
Yet, Ahrens said, he no longer mourns what he’s lost — the high-powered job, the ability to run, play tennis or even walk without the aid of a walker. He prefers, he said, to focus on the promise of his remaining time.
The days, weeks and months ahead are filled with planned trips with friends and family. Each week, since his mother died from cancer 15 years ago, Ahrens’ family and friends gather for a big dinner — to talk, share and laugh. Those dinners continue and Ahrens said he plans on much laughter in the years ahead, no matter how few the years may be.
He’s also become a fierce advocate for the ALS Association, making his own Ice Bucket Challenge video last summer — a video that inspired a team of friends and co-workers to raise more than $20,000 last September in the Walk to Defeat ALS.
“I’m an optimistic guy,” he said. “But I’m not blind to the reality of what my future will bring. When you go to ALS events, and you get a glimpse of ‘Christmas Future’ … well, that can be helpful — as long as you don’t let it take away from what you are able to do today.”
“Anything we want to do …” he said, “we shouldn’t wait.”