lou gehrig's disease
The discovery could help scientists develop new therapies.
In 2014, 36 year-old Austin, Texas man was given less than two years to live. He was diagnosed with Amyotrophic Lateral Sclerosis, commonly referred to as Lou Gehrig's Disease. Now confined to a wheelchair, unable to walk, eat, use his arms, or speak, he is making a public plea to be turned into a robot.
This is much more than a memoir. It is an unexpected view inside a terminal disease. Bruce's is a path all of us will have to take.
When Bruce Kramer, a Minnesota professor of education, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) - or Lou Gehrig's disease - in 2010, his world exploded. Kramer began writing a blog to capture the agony of his physical deterioration and his struggle to hold onto the splintered pieces of his life
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?
"Nobody knew if I would be able to."
One year and $100 million later...
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.