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open source software Archives | PatientsLikeMe
Are you a Boston-area Ruby programmer or Ruby on Rails developer? An open source software enthusiast? Or someone who just likes to hang out with the techie folks?
PatientsLikeMe is a proud sponsor of the Boston Ruby Group’s upcoming social event, the cheekily named Bubbly Bub & Grub at a Pub in the Hub Club, which takes place Tuesday, July 24th, at 6:30 p.m. If the name alone doesn’t get you there, how about the chance to schmooze, eat and drink with “the finest Rubyists this side of the Mississippi”?
The Boston Ruby Group is known for their regular presentation nights (one or two 45-minute presentations, lightning talks and announcements) and project nights (where programmers get together and write code). This particular event, however, is all about meeting people and having fun. Anyone, whether a “Rubyist” or not, is welcome.
For an ALS patient, an eye gaze system – a type of augmentative speech device that translates eye movements into words – can make it possible to communicate with loved ones when speech is impaired or lost. But as animation studio owner Mick Ebeling found out, not every patient with advanced ALS has one. The problem? They’re big and expensive, and in many cases, US health insurers won’t cover them.
This discovery came about when Ebeling learned about a legendary Los Angeles graffiti artist named Tony “TEMPT ONE” Quan (whose “tag” is shown above), who was diagnosed with ALS at age 34. Quan’s family told him that they were only able to communicate with their completely paralyzed son through spelling out words. Shocked, Ebeling decided he had to help. “There are certain inalienable rights that people are entitled to, and I think being able to express yourself is one of them,” says Ebeling, who now gives TED talks (see video below) about this unexpected calling.
First, Ebeling convinced Quan’s insurer to cover an eye gaze system so that the talented artist could “speak” again. But he didn’t stop there. He wanted Quan to not only be able to communicate but to draw, so that he could continue his career. So Ebeling founded the Not Impossible Foundation and enlisted the help of programmers and open source activists in creating a low-cost, open-access writing and drawing device for paralyzed patients. Despite having no background in ocular recognition, they pulled it off.
Named one of the top 50 inventions of 2010 by Time, the brilliantly simple EyeWriter device can be made for less than $50. It involves a pair of sunglasses, IR LED lights, copper wire and a PC webcam. There’s no technology component that can’t be found at Home Depot or Radio Shack, and that’s the point. With free open-source software that can be downloaded online, the DIY EyeWriter is a device almost anyone can build and use. (Download the instructions here.)
“We’ve created a device that has absolutely no limitations,” says Ebeling. “There’s no insurance company that can say ‘no.’ There’s no hospital that can say ‘no.’ Anybody who’s paralyzed now has access to draw or communicate using only their eyes.” Case in point: in April 2009, Quan was able to create a completely new 10-story mural using only his eyes. Two years later, his post-ALS artwork appeared alongside famous street artists Banksy and Shepard Fairey in a MOCA exhibit.