Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Sunday, February 27, 2011

Nobody Wants To Sign Up For This Game Of Musical Chairs

We hate to associate the word "rare" with ALS. It's not so rare if you pay attention. Nonetheless, it does fall into that legal category in the U.S. because of a definition in the Rare Disease Act of 2002 -- "any disease or condition that affects less than 200,000 persons in the United States."

Picture a huge ALS game of musical chairs. There are perhaps around 20,000 people in the room sitting in 20,000 chairs. The music starts. The people get up and circle the chairs. In a year we jam 6,000 more people in that room. When the music stops, Mother Nature has a grim way of dealing with the 6,000 people without chairs.

This cruel game goes on year after year after year after year after year. The few chairs in the room don't mean that ALS isn't a significant problem. The small number of chairs means that ALS is a huge problem. The flow of new faces and the loss of life with this disease is staggering. The "rare" definition simply doesn't tell the story. Taking a snapshot of the chairs doesn't tell the story. Each chair belongs to a lot of victims.

1 comment:

  1. My husband has ALS let's all stick together as there is power in numbers :)