Most pALS must choose btwn: a) silence b) archaic communication. IE. blinking c) paying $20k for a system weaker than ur 1980s computer -SG #detAiLS I posted this on Twitter & Facebook on 12.29 2012. The general reaction was astonishment & a call for change. There was also, though, several responses asking what I was [...]
Well. Let’s get to it. Yesterday I met with one of the best Amyotrophic Lateral Sclerosis (ALS) physicians in the world and he diagnosed me with ALS. I have spoken with everyone on this email chain in the last few weeks so I think most know the ‘deal’. Below is a YouTube link. If it [...]
I have not spoken with one person who understands the upcoming 3 day per week publication of the New Orleans Times Picayune. I have heard the dismay of readers and the pleas from both the community and employees as they anticipate reductions this fall. As someone who’s lost most of his physical abilities over the [...]
1. Help provide individuals with neuromuscular diseases or injuries with leading edge technology, equipment and services.
2. Create a global conversation about ALS to ultimately find solutions and an end to the disease.
3. Raise public awareness toward ALS by providing and documenting extraordinary life adventures for individuals with muscular diseases or injuries.
