I worked at a local ALS organization for several years. Lou Gehrig’s disease was a disease I had heard about, but knew nothing about. I quickly learned that a patient’s body stops working, but his/her mind stays totally alert. It starts with motor skills. It eventually expands to your organs, affecting eating and ultimately breathing. It’s fatal. There is no way to stop the progress of the disease.
It’s estimated that about 30,000 people in the US have the disease at any given time. It’s an orphan disease. Pharma doesn’t invest in it because there aren’t enough people who have it. There is limited other funding outside of private donations.
The ALS Association has raised over 23 million dollars to date. I would be willing to bet that over 30,000 people have donated to ALS to make that total. SO, IF my estimate is right, because of this challenge: more people have donated to ALS than actually have the disease. Let that sink in.
23 million dollars would allow EVERY SINGLE PERSON with ALS to have an in-home nurse to help with their breathing machine for over eight hours. Any family member of a person with ALS will tell you how impactful that would be on their lives, even if just for one day.
30,000 people. 23 million dollars and climbing. It’s time.