I've had decidedly mixed feelings about the countless on line video clips I’ve seen of people dumping buckets of ice water on each other to help raise money to cure Amyotrophic Lateral Sclerosis, or ALS.
About 30,000 Americans have this degenerative neurological disease at any time, making it an “orphan disease” which means research funding to find a cure is scarce, compared to more common diseases like cancer. So at first I was pleased to see anyone even talking about ALS – especially since it usually gets little public attention.
I didn’t wonder why Bill Gates engineered his own ice bucket challenge because he and his wife Melinda have dedicated much of their fortunes to the eradication of diseases like malaria and polio. And I loved the video in which 50 members of Dartmouth-Hitchcock Medical Center’s neurology department - a group that fights ALS daily - did a group ice-bucket dumping.
But I began to wonder if it was a good thing that some people without a connection to the disease – including celebrities whose exploits are normally found in tabloids - were posting ice bucket videos of themselves on social media. I couldn’t help questioning whether they were more concerned about curing ALS - or promoting themselves.
Then two recent articles with very different perspectives provided some clarity.
Angelina Fanous was diagnosed a few months ago at age 29, and she writes on Vice.com about the onset of the disease: the shock of suddenly feeling soreness in her hands and having difficulty opening a door and holding a fork. She describes grueling daily tests in doctors’ offices and losing hope that the problem might be something other than ALS, which kills patients within three to five years.
Fanous writes that the worst part of having ALS is realizing there’s no cure. So she has no problem with people posting videos of themselves being doused with ice water if it brings in money that leads to a cure. So far, the challenge has raised about $40 million, compared to $2.1 million during the same period last year. So Fanous applauds people who dump ice on themselves to raise money to fight ALS – for self-promotion or not - and urges people like me, who mistrust these viral videos, to just get over it.
An article in The Washington Post adds another perspective. The $40 million raised this summer is just a drop in the ice bucket compared to the usual $5 billion required to take a potential drug from conception to testing. So those serious about finding a cure understand that the federal government must play a critical role. Funding for orphan diseases, like ALS, should come from the National Institutes of Health, but its budget has been repeatedly cut.
So I don’t plan to douse myself with ice water and post a video clip to the internet, but I’ll smile when I see others doing it. And I’ll urge my representatives in Washington to increase federal funding for ALS research.
