As many people have pointed out, dumping a bucket of ice on your head isn’t going to cure ALS and it doesn’t do anything directly for my family. But it still matters.
Most people in the ALS community believe that if more people were aware of the horrible nature of this disease, then much more resources would be devoted to finding a treatment or a cure. I personally knew nothing about ALS until I was going through the process of receiving my diagnosis. So anything that shines a light on what people currently living with the disease and their loved ones are going through is a positive.
Sure in some of the videos it isn’t clear whether or not people truly get it or just want to see themselves on Facebook. It is a vanity project for many. Lots of people who watch Justin Timerlake or Jimmy Fallon or Aaron Rodgers just laugh at the spectacle and move on. However, in the majority of the ones I have seen, people are thinking about ALS. ALS was the fourth most searched topic on Google this weekend. Maybe they just click on a link to see who Pat Quinn or Pete Frates is. Well, it only takes a second for the reality of ALS to hit you when you see Pete Frates. An expectant father and charismatic former college baseball star who now is losing all of his physical abilities. He lives in Boston close to some of the most preeminent ALS researchers in the world, but right now there is little they can do for him. When he was diagnosed he got the same prognosis that Lou Gerhig did 75 years ago. 2 to 5 year average life expectancy. No real treatments. No cure. He is left to fight on his own, with his family, and with anyone that will join him. He has inspired thousands of people to get involved. If pouring ice water on your head and making silly videos on Facebook brings more people into that fight, then we as a community win.
With something like this, you also see how many people are supporting other families facing this disease. You realize that the tent is growing. It is similar to the feeling I got when I went down to New Orleans. Everyone in that city is behind Steve Gleason. That means they are behind me as well. Seeing the outpouring of support for other people living with ALS through a something like the ice bucket challenge gives me hope that someone has my families’ back, that the ALS community will receive the resources it needs to find a treatment or a cure as quickly as possible. And it is all playing out. Awareness is leading to actions. Many ALS organizations, like ALS TDI (www.als.net) have reported tenfold increases in fund raising over the past couple of weeks.
So I completely agree with the skeptics, pouring a bucket of ice over your head will not cure ALS and does not help families living with the disease. But people learning about the horrors of the disease and the desperate need for treatments, people reaching out to support those of us affected, people choosing to generously donate ALS charities like www.als.net and www.teamgleason.org, this makes a difference. This gives hope to me and my family.