There is no denying that the ice bucket challenge continues to be an unqualified success, despite the naysayers who have negated and criticized it from many angles – waste of water, and more of an exercise in raising awareness of one’s own craziness, altruism, “slacktivism” and/or attractiveness in a wet T-shirt.
Here’s why I am so happy it has taken off. Back in the day (30 plus years ago), I was one of the first OTs to consult with the MDA ( Muscular Dystrophy Association), and provided services to children and adults with many neuromuscular diseases. I was always hardest hit by the people with ALS. The decline in function, and decrease in strength was steady, apparent and ongoing. The impact on families was huge. Living rooms became makeshift bedrooms to accommodate hospital beds, hoyer lifts and the like. Spouses became caretakers, while secretly mourning the loss of their spouse as they knew them. Looking back, the challenges as an OT were paramount. With the physical and functional decline so swift and non forgiving, I was constantly challenged to think on the spot, make immediate accommodations, re-purposing and intuitive adaptations to the environment. All in the hope of making the moment, or the day more tolerable for the family and patient. What worked one day didn’t the next as the disease ran its course. My feelings of inadequacy and frustration matched the family’s feelings of desperation and isolation, yet in a way it was OT at its finest.
The Ice Bucket Challenge is raising public awareness of ALS in addition to raising money for research on the disease. Like most fundraising, the efforts will focus more on the cure while families and therapists focus on making day to day living as tolerable as possible. ALS is classified as an “orphan disease”, since fewer than 200,000 people get the diagnosis annually. Generally that means there is less research and clinical trials for treatment. ALS has never been and never will be as profitable a target for pharmaceutical companies to invest millions of dollars in as they do with more prevalent diseases ( ie cancer, arthritis etc.).
The New York Times reports that in the last few weeks, ALSA has received $13.3 million and welcomed 260,000 new donors. While the President of the Association Barbara Newhouse says she appreciates the monetary aspect of the Ice Bucket Challenge, she says, “the visibility that this disease is getting as a result of the challenge is truly invaluable.” Monetary donations coupled with social-media-friendly stunts build awareness and encourage others to give in a way that quietly donating cash does not. That’s what that silly tub of cold water does; audiences get a little entertainment, which helps the viralness of the cause and encourages donations. It also strives to make people want to learn more about the disease, and what organizations like the ALS Association are doing to fight it and provide assistance to those living with it.”
Practice owners who work with neuromuscular conditions may want to jump on this bandwagon- a twin win situation, and what I call “cause –related” marketing. It can be great publicity for your practice and a great way to help raise money and awareness. ALS is not only an incurable disease, it is an underfunded one as well.