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From a basement in London, Ont.: The open-source communications tech that’s changing ALS patients’ lives

They thought about turning it into a business.

They could have made millions.

“Screw it,” says lead engineer Javed Gangjee, in his basement in London Ont., when asked about the commercial potential of his work.

The engineer, a Western University grad, is part of an organization that’s giving a voice to people who were trapped in their own bodies.

And it’s open-source. When he’s satisfied with the code, he’ll publish it online so anyone can use it. They just have to help people along the way in return.

“It’s based on the idea that, no matter who you are and what your biological conditions, everyone has the right to speak your mind,” said Gangjee, who’s 28.

It’s led by the SpeakYourMind Foundation. Gangjee is one of just two staff members, working 15 hours a week but donating 30 more hours as a volunteer.

He’s making communications tech for people with neurological injury or disease, like ALS. What he creates tracks the patient’s eye movements to pick out letters and words, giving them a voice.

It’s simple. All it takes is a webcam and the code that Gangjee is developing. Each device is tailored for the individual and the principle is similar to old-fashioned boards of letters and symbols, and other tech that’s already out there.

But here’s the kicker: It only costs $100. These same devices cost at least $5,000 commercially, and can be as much as $15,000. For families who are tens or even hundreds of thousands of dollars in debt, that’s why it’s life-changing.

 London engineer Javed Gangjee.

London engineer Javed Gangjee.

“We build open-source communication devices, usually for people with ALS,” Gangjee said, adding that they’re also helping stroke victims and one young victim of a drunk driver. There are thousands of people who could be helped.

“A lot of these people are generally in deep amounts of debt because of their medical expenses, especially in the States,” Gangjee continued.

“What happens is the communication device ends up being the lowest of their priorities. But, to me, it’s huge. It’s what gives us life.

“What happens is all the commercial devices, and there are a couple of big companies that build those, when they sell it, they mark it up really high. That’s because the number of people who have ALS is very few.

“You have to hike up the profit margin because there are so few people in your target audience. But what happens is your target audience doesn’t really have a high income.”

The higher price means a lot of devices like this are traded between patients. They can often be found on eBay or Kijiji. Gangjee says they’re not particularly good because they’re not designed for an individual’s needs.

SpeakYourMind, which is a nonprofit based in Boston, does it differently.

“Every person that we work with is unique in their own way,” Gangjee said. “Their needs are unique. Their conditions are unique.”

His software platform is so versatile that it can be adapted for different people’s abilities. Each time he completes code for one device, it takes a shorter time because he’s building on work he’s already done. The final aim is a system so simple that anyone can set it up, including medical professionals and caregivers.

“We‘re catering to the most difficult of situations,” he said. “The most difficult of situations is ALS.

“These are the people that slipped through the cracks of government, insurance and everything. These are the people that have it the hardest. The disease is the cruellest.”

With ALS, the degeneration works its way through the body. Eye movements are the last to go. So, SpeakYourMind can keep people communicating through the final stages of the disease.

But surely this could be a viable business, even while helping people? Gangjee, who has a full-time job when he’s not helping SpeakYourMind, said they thought about that.

“We just decided, ‘Screw it’,” he said. “It’s not right. We’re making it for people and it’s going to be free. Everything that we wanted to do, as far as the end user goes, will have to be free.”

That doesn’t mean there aren’t costs. The foundation accepts individual donations and continues to seek corporate sponsors.

But, throughout it all, Gangjee’s altruism shines through. He insists it’s about doing the right thing.

“I know what’s right and what’s wrong here,” he said, emphasizing each word. “Making a profit off someone speaking their mind is wrong. That should be a right.

“Can you imagine that, if your motivations were different from profit, how the world could change? It’s an archaic idea to think the world has to be this way.

“The people who need this are not getting it in a timely manner. All bets are off, as far as I’m concerned.”

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