Thousands of Iowans dumped buckets of ice water on their heads last year in an effort to raise money for medical research into ALS or Lou Gehrig’s disease. Officials with the Iowa chapter of the ALS Association hope for a repeat of the extremely popular fundraiser this year — when the weather gets a little warmer.
Chapter executive director John Nuss says ALS Advocacy Day is next week in Washington D.C. Nuss says, “I’m taking a delegation of about nine folks, board members, people living with ALS and their family members to hit the hill and advocate for different issues we’re trying to get taken care of and to advocate for the ALS community.”
There’s also a “hope vigil” planned for next week as well in Des Moines for people who have lost loved ones to the neurological disease.
“In the middle of May, we’ll be attending the University of Iowa ALS Clinic,” Nuss says. “ALS patients can come and see different disciplines, check up on their health and the progression of the disease and they’re able to see a number of specialists in one spot.”
The Ice Bucket Challenge proved to be a viral success on social media last year, raising $350,000 in Iowa and more than $115 million globally. It’s hoped it will be an annual sensation, Nuss says, and he expects to start seeing new videos on Facebook soon of people getting drenched for the cause.
“It’s because we have to,” Nuss says. “We have to keep the momentum going. We have to keep this disease top of mind because it is so devastating. We raised a lot of money last year which is just the tip of the iceberg. We’re just getting started and we have a lot of work to do.”
Several Iowa communities are holding walks to benefit ALS research, including Cedar Rapids, Des Moines, Davenport and Sioux City.
ALS stands for Amyotrophic Lateral Sclerosis. It’s a motor neuron disease, first described in 1869. It usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. Once diagnosed, life expectancy is usually only two to five years. About 250 Iowans are afflicted with ALS at any one time. Learn more at www.alsaiowa.org.
Pat Powers, KQWC, Webster City contributed to this story.