ALS is a very expensive disease, costing patients an estimated $300,000 a year. The average life expectancy for someone with ALS is 18 months. We wouldn't leave a soldier with a battle wound sitting around waiting to see a doctor for 16 months. So why are we now?
In the tradition of Same Time, Next Year where Alan Alda and Ellen Burstyn trysted annually for a quarter century, I was intimate with Jerry Lewis, every September. I'd meet him on Labor Day and we'd spend the entire night together. Drinks, dinner.
Although designated an "orphan disease" because it affects less than 200,000 Americans, Amyotrophic Lateral Sclerosis (ALS) saw millions of benefactors stand tall last year to douse themselves with ice water in support of a cure. The numbers were staggering.
I have known Augie Nieto for over 25 years as the founder and owner of Life Fitness, one of the world's largest manufacturer's of Cardio & Strength equipment. When I first met Augie he was driving around in a Slugo Motor Home trying to sell his LifeCycles to Nautilus clubs.
The disease is strong, and without access to the means of someone like Stephen Hawking, Jason is in bad need of better care and living conditions in order to continue with his important mission. That is why his family and friends, have set up a GoFundMe campaign for Jason Pillow.
May was the first ALS Awareness Month since the Ice Bucket Challenge. That silly, organic, viral campaign did more for ALS awareness than years of marketing by any organization could have ever done. Millions of people created videos last summer.
You may not know anyone with ALS. You may not want to know about this disease, or how devastating it is. You may not want to think about things that are so frightening or painful or things that could actually happen to you.
The daily life of ALS is constantly filled with challenges for everyone involved. It is not just me, the patient (I hate that word), but for everyone around me. This is never more true than when travel, especially air travel, is on the horizon.
The film Still Alice starting Julianne Moore which deals with early onset Alzheimer's, has a back story in which one of the two directors was diagnosed with ALS, something poignant in and of itself, and something which had an impact on the film's direction as well.
The Theory of Everything in the end is about everything. About the cosmos. About the existence of God. What can be scientifically proven and what can not. Disabilities, which we all have in a myriad of different ways, and what we do with them. It's a love story.