LOOKING AHEAD: Nancy Worthen works with her daughter, Maggie Worthen, seated, using an assistive-technology device developed by SpeakYourMind.
COURTESY DAN BACHER
By Rhonda J. Miller PBN Staff Writer
For people silenced by unwelcome intruders such as a stroke, traumatic brain injury, cerebral palsy, spinal cord injury or Lou Gehrig’s disease, which affects the nerve cells in the brain and spinal cord that control voluntary muscle movement, mental activity may not have stopped – only the means to communicate may be interrupted.
Continuing advances in assistive technology make communication possible, in some cases, but developments have been too slow and devices too cumbersome and too expensive to suit Dan Bacher, founder and executive director of the SpeakYourMind Foundation, a Providence-based nonprofit that spun out of the BrainGate lab at Brown University and Massachusetts General Hospital.
BrainGate does neuroscience research and evaluates medical devices that directly interact with the brain and could improve quality of life for people with disabilities.
The SpeakYourMind Foundation has developed prototypes specifically for a few individual clients. The organization, founded in January 2013, is ready to begin turning prototypes to products that can be more widely used, said Bacher at the Assistive Technology Make-A-Thon at Brown University held April 26-27, an event intended to encourage new developments for a range of communication issues.
“We have designers, engineers and people with clinical expertise who can use technology to help people communicate, from a child with autism who wants water to an elderly person who might have had a stroke,” said Bacher.
One innovative, and inexpensive, tool developed by the team at SpeakYourMind Foundation that improved quality of life is a communication device allowing Margaret “Maggie” Worthen to break through what doctors thought was a vegetative state.
Worthen was about to graduate from Smith College in 2006, a Spanish major with a job lined up after graduation and long-term plans to go to veterinary school, said her mother, Nancy Worthen, of Providence.
Then Maggie had a brain-stem stroke that left her paralyzed and unable to speak.
Her story is documented in a video, which is posted on the Indiegogo crowd funding site, where the all-volunteer, cross-disciplinary development team at SpeakYourMind Foundation raised an initial $23,000.
“There were issues with the neurologist about her consciousness. This doctor was saying he didn’t think that she would progress beyond a vegetative state,” said Worthen. The family had to decide on whether to continue life-sustaining measures.
“I decided we’re going to do everything,” said Worthen. Maggie saw specialists and finally, a neurologist in New York, Dr. Nicholas Schiff of New York Presbyterian Hospital. He found that she could follow a command to look downward with her left eye.
“It was amazing. The answer was there. She definitely could understand. She definitely could respond using her eye movement,” said her mother.
The doctor asked, “Can you see your mother?” and her response indicated “yes,” Nancy Worthen said.
“Her mom found every brain-computer interface available for her and we’ve seen progress, but it wasn’t until SpeakYourMind Foundation put together this low-cost, highly accurate camera to put on her left eye that we’ve seen any real change in her,” said Schiff. “Everybody on our team was stunned when she was able to take that camera and do 90 downward eye movements in three minutes.”
The eye-tracker device cost about $30, compared to more complex, assistive technology that could cost up to $15,000, said Bacher.
SpeakYourMind devices have been developed, so far, by volunteer engineers, designers and medical professionals, but within the year the organization plans to hire a few engineers, said Bacher.
“Our thought was that the potential for funding is better as a nonprofit,” said Brendan McNally, president of the board of the SpeakYourMind Foundation, who is associate director of business, entrepreneurship and organizations at Brown. “There is commercial potential, but right now we feel there’s a higher chance of success as a nonprofit to get research grants and charitable donations.” •