The ALS Ice Bucket Challenge has captured the fun-loving kid in Americans of all ages. But for neurologists who treat persons with ALS there is far more challenge than fun.
The “Ice Bucket Challenge” has become a national phenomenon thanks to tremendous support from social media. One question about this and other social media fund raising efforts is the real impact of these campaigns on the nonprofit organizations they support.
The ice bucket challenge was first created by the friends and family of Peter Frates, a former Boston College baseball player diagnosed with amyotrophic lateral sclerosis (ALS). The challenge requires designated people to have buckets of ice water dumped over their heads and make a $15 donation to the ALS Association. If the challenge is refused, a $100 donation must be made.
Although still underway, this effort has raised over $53 million. In addition, it has raised awareness of this deadly condition.
ALS is also known as Lou Gehrig’s disease. This devastating disease that strikes over 5,000 Americans each year is a nightmare for our patients and has long frustrated neurologists. We watch as it continues to end its victims’ lives, between 2 and 5 years after the diagnosis is confirmed. This trajectory, unfortunately, is no different from when Lou Gehrig was diagnosed more than 7 decades ago. The money raised by the Ice Bucket Challenge is sorely needed to advance current research efforts toward a cure.
Neuromuscular specialists, and I am one, have had the honor of supporting many great patients from the time they were first diagnosed through their valiant battle and eventual passing. We also feel the heartache of being unable to do more.
I have not personally been challenged and I am uncertain as to how I would respond. I can confidently say that being doused with ice water is much easier than the challenge faced by family members, friends and health care professionals who support these patients every day.