You may not recognize what ALS (Amyotrophic lateral sclerosis) is, you may recognize it as Lou Gherig’s Disease, or that disease that Stephen Hawking has. It is a terrible disease that attacks the nerves of the voluntary muscle system. Eventually that person with ALS will not be able to move at all, and leaves them with the grim prospect of living 3 to 5 years.
For a while there, the ALS Ice Bucket Challenge was cool and it brought awareness to the forefront. That is awesome. We need more challenges to become viral like that.
“There’s not very much incentive for the pharmaceutical companies to invest the billions of dollars it takes to develop a drug, because I’m not profitable, I’m not worth saving.” says a young man of 26 years old who was diagnosed with ALS.
But when we have a message that goes viral like the ALS challenge, we make a difference and we make them notice! I wish we could make that go viral again. I can’t imagine being trapped in my own body but still being fully aware of everything around me.
Here is a great article by Patrick O’Brien about living with ALS and seeing the ALS Ice Bucket Challenge go viral. Patrick O’Brien also made a documentary about his life with ALS called TransFatty Lives. Despite having ALS Patrick still has a great sense of humor and let’s his personality shine, he even got naked to raise awareness!
