Beyond the Ice Bucket Challenge: Iowans Affected by ALS

Aug 25, 2014

A year ago this time, the national ALS Association raised nearly 2 million dollars. This year, in the same time period, they've raised 40 times that. What changed?

In four words: the Ice Bucket Challenge. A fundraising initiative co-opted for Amyotrophic Lateral Sclerosis by former baseball player Peter Frates, it consists of an individual dumping a bucket of ice water over their head, donating money to the ALS Association and challenging three of their friends to do the same. 

Beyond the simplicity of Facebook dares, however, are Iowans whose families have been devastated by ALS. They're eager not only for people to donate money to the cause, but to understand the disease itself.

Rehka Basu is a columnist for the Des Moines Register who lost her husband, fellow Des Moines Register columnist Rob Borsellino, to ALS in 2006.

"I almost couldn't believe it because ALS has just not been a part of the popular parlance. People really have not talked about that much, it hasn't been well-known, it hasn't been addressed, there's been no cure, it's been so stagnant. And the fact that more and more people were taking this challenge and challenging others, I was so excited frankly."

Basu says the ugliness and difficulty of the disease make it difficult to talk about. She says the Ice Bucket Challenge changes that.

"I know that some people don't think it's a very dignified way to address a really hideous disease, but I think the more attention to it the better. It is such a hideous disease it's really difficult to even talk about, so to be able to do something that adds a little levity to the subject is a positive development."

On this hour of River to River, host Ben Kieffer talks with Basu and Leslie Nolte, an Iowan who lost her mother to ALS. Dr. Andrea Swenson of the University of Iowa Hospitals and Clinics and Abigail Costigan of the ALS Association Iowa chapter also join the conversation.