Former WSU football star and New Orleans Saints special teams cult hero Steve Gleason has ALS, a debilitating and cruel disease that strips its victims of the ability to control their muscles and kills them in 2-5 years. However, until the very end patients can control their eyes and eyelids. This is the primary way they communicate – by moving their eyes whereby a tablet computer tracks their eyes – after their voice goes.
The equipment for this is crude, e.g. it does not do much predictive typing like any smart phone does when it guesses the rest of your word. It is also very expensive, $4K to start with a barebones system and often way more (Steve’s system costs $20K). Even $4K is far beyond what Medicare will cover and what many victims of ALS can afford to pay themselves, so sadly they simply can’t communicate effectively once their voice is gone. Tragically, the patients’ minds are still perfectly good; they are basically trapped incommunicado.
WSU’s “World Class, Face to Face” students and faculty will develop inexpensive technology and release it under open source license with no royalties in order to disrupt this unacceptable status quo for ALS patients. This will start with a senior project during this school year but there are broader plans. Steve Gleason and his bravery, his mother Gail, and Team Gleason are well known to many WSU students so we anticipate no problem in getting broader involvement from students from many majors over the next year and beyond.
In the short term, donations are extremely helpful for a number of things described later in this document. These include computer hardware and accessories, trips to visit ALS technologists, pizza for recruiting meetings on campus, etc.