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By Richard Asinof
We often take for granted the ability to speak up and express ourselves, to share thoughts and feelings with loved ones, to plug into our increasingly connected world. However, these opportunities are often not available for many people with neurological injuries and disease.
A new startup nonprofit, the SpeakYourMind Foundation in Providence, a spinoff of Brown’s BrainGate lab, hopes to change that equation by using low-cost, off-the-shelf hardware and custom software to create communications solutions.
Providence Business News talked recently with Dan Bacher, founder and executive director of the SpeakYourMind Foundation, to learn more about such innovative efforts.
PBN: What are the aims of your nonprofit start-up, SpeakYourMind Foundation?
BACHER: Our mission is to create, distribute and support personalized assistive communication technologies for individuals with motor and speech limitations due to neurological injury and disease.
We work with clients and their families living with ALS (Lou Gehrig’s Disease), traumatic brain injury, stroke, spinal cord injury, and other conditions that make communication difficult.
We further aim to educate and inspire the next generation of socially-conscious developers, designers, and engineers to apply their technical skills to help those most in need. We have teams of volunteers in a program that works closely with our clients to build solutions from the ground up.
At a higher level, we are really looking to bridge the gap between independent technology creators and health care providers to improve the quality of life for people with disabilities by delivering customized products and services at a fraction of the cost of the current products on the market.
PBN: How is the foundation’s work distinct and different from the Brown Institute for Brain Science and BrainGate?
BACHER: The SpeakYourMind Foundation is a spinoff of the BrainGate lab; our focus is on delivering communication solutions directly to end-users, as opposed to conducting neuroscience research and evaluating medical devices that directly interact with the brain.
The idea was actually born out of my experiences working as an R&D engineer at Brown University, where I regularly interacted with the participants enrolled in the BrainGate clinical trial.
While investigating the use of advanced neurotechnologies to enable individuals with paralysis or limb loss to control external devices with their thoughts (also referred to as a brain-computer interface), I observed a consistent and fundamental problem: all of our participants were unable move their limbs, unable to speak, and had no effective way to communicate.
Many had tried to use assistive devices on the market but failed because they are expensive, hard to find, poorly supported, antiquated, difficult to set up, aesthetically unpleasant, and far from user friendly.
I thought: no one should have to pay $20,000+ for the ability to converse with their friends and family – especially when the product they paid for fails to meet their needs.
I decided to start building prototype communication devices using affordable off-the-shelf hardware. One of our participants had suffered a brainstem stroke many years earlier, leaving him paralyzed and unable to speak. His typical means of communication was for someone to say each letter of the alphabet in sequence and he would raise his eyebrow to select the letter he wanted to spell – and then repeat this process to eventually put together words and phrases.
Motivated to find a better solution for him, I created a simple application that could detect his eyebrow movement using a standard webcam to enable him to control a custom spelling application running on a laptop. Now he can independently communicate by typing words and phrases, and using a text-to-speech engine and an e-mail client built into the software he can interact with the world – all for the cost of a webcam and a few days of writing some basic software.
So, while the SpeakYourMind Foundation is very much a spinoff of the BrainGate lab, sharing the common goal of improving the quality of life for individuals with disabilities using technology, SpeakYourMind aims to become a scalable organization that matches up technology creators and people with disabilities who need our help.
PBN: Can you describe the potential market for using low-cost, off-the shelf hardware and custom software, to create communications solutions?
BACHER: One of the greatest challenges in the assistive technology market is that it is very fragmented. There are a wide array of neurological injuries and diseases that result in people having very unique physical needs, cognitive needs, and personal preferences – making it almost impossible to build a viable product using the conventional top-down approach.
This is why we build our products from the bottom up – so we can customize our solutions for each client. By tapping local student and young professional volunteers, we have the resources and the creative energy necessary to take this approach. By adapting low-cost, off-the-shelf hardware, we can create and support innovative products while keeping them affordable as well.
Examples of our products include low-cost eye- and head-tracking to enable individuals with paralysis to independently control a computer, custom software interfaces that make communication easier and more efficient, and third-party integration tools to provide text-to-speech, e-mail, social media, word composition, and web browser access.
A patient-centered technology development model like ours could potentially be applied to tackle some of our greatest challenges today, resulting in better patient outcomes and lower health care costs.
PBN: Do you believe that Providence is emerging as a national hub, a place of convergence, for translating brain research into new products and companies?
BACHER: Providence is certainly an emerging hub for the commercialization of a wide range of health care products, including technologies created by local, world-class researchers related to brain science. The synergy of technology creators, health care providers, and the burgeoning social enterprise ecosystem here in Providence has provided the ideal setting to launch the SpeakYourMind Foundation. We bridge the gap between these disparate fields and hope to thrive in what has proven to be an overwhelmingly supportive environment.
PBN: How do you think these new products will change the way the community views communication disabilities?
BACHER: There is no way around the fact that the assistive technology industry is broken. In a world where incredible advances in technology make our lives more productive and interconnected, many individuals with communication disabilities have been left out of the conversation.
The primary goal of the SpeakYourMind Foundation is to directly improve the lives of this disenfranchised group of people through technology, but I hope that we are also able to raise awareness about communication disabilities.
I believe that everyone should have the right to share their thoughts and feelings with their loved ones, to take part in their own health care decisions, and to plug in to our increasingly connected world. However, these opportunities are not available for many people with neurological injuries and diseases.