Raising Hope with
Technology Against ALS


Athletes started it. CEOs embraced it. Politicians supported it. So did showbiz celebrities, rock stars, firefighters, cops, and thousands of men, women, and kids. The ice-bucket challenge went viral on social media this summer, raising awareness and over $100 million in donations for the ALS Association to fund research for amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig's disease.”

While the ALS Association is deciding how to best allocate the donations to fund research in finding a cure for the disease, a New Jersey-based nonprofit organization named Technology Against ALS Foundation (TA-ALS), is striving to address the biggest challenge all people with ALS face – to communicate.

ALS is a progressive neurodegenerative disease that ultimately leads to total paralysis. Life expectancy is typically two to five years from the time of diagnosis. “There is no cure for it and the only medicine approved by the FDA prolongs life by a few months,” says Sandeep Tungare, the founder of TA-ALS, an organization that aims to exploit technology for making the lives of ALS patients easier.

Tungare’s brother was diagnosed with ALS in 2009 and the disease has progressed rapidly since then. “My brother’s personality is unchanged and his desire to communicate with us has actually grown stronger over time,” he highlights.

When his brother lost his voice, which happens to all ALS patients as the disease progresses, Tungare tried several devices that use eye-tracking technology (converting the eye movement to speech in order to communicate) but found them complex and expensive. “Even for a technologist like myself trying to get my brother to use those devices with cumbersome screens was very difficult. As an engineer you question how do I fix this?” says Tungare, who is also the CEO of Vistaar Technologies.

Sandeep Tungare, the founder of TA-ALS, demonstrating the TAALS communicator prototype. Image TA-ALS.org

Simple Solution

Current speech-generating devices rely on tracking the patient’s eye movements and translating them to mouse movements on a screen or keystrokes on a virtual keyboard. This then creates text that can be spoken aloud or otherwise digitally transmitted by the user.

When the most sophisticated of these devices failed to work successfully for his brother, Tungare founded TA-ALS in 2012 with a hope to give his brother, and others like him, a voice. The thought of creating a new device occurred to him while driving his car that had a heads-up display on its windscreen. He had recently read a book about a prison in North Vietnam featuring a coded communication scheme devised by American POWs where coded tapping on walls allowed them to communicate while in prolonged stretches of solitary confinement.

In a flash of inspiration, Tungare imagined a device that would combine a heads-up display, a coding scheme, eye tracking, accelerometer-based motion detection and software that would synthesize all these inputs to create a high words-per-minute (WPM) speech-generating device.

He credits his team member Amitabh Patil, a software engineer, with making his vision a reality. Patil came up with an idea to create a simple device that can work without a display and allows people to speak through their eyes. “The focus was on reliability and simplicity,” emphasizes Tungare, who moved forward with a mission – to create a low-cost, simple, and portable solution that can be used in any setting.

The technology already existed in off-the-shelf components and the TA-ALS team decided to integrate it into an easy-to-use device, called the TAALS communicator. “The objective we had was to keep the device as simple and low-cost as possible,” explains Patil. “The goal was not to exceed the cost of $100 for the basic version, so with that constraint the challenge was to find the right components and software,” he adds.

The TAALS communicator uses off-the-shelf components and electronics that are bundled into a small box that’s the size of a mobile phone. The box communicates with an interface the patient is wearing on the face or head (typically glasses), tracks the eye movement, and then converts that to speech.

According to Tungare, people normally speak 100 WPM and a standard social conversation is typically 40 WPM. The existing systems that are able to produce 1-2 WPM, such as the one used by physicist Stephen Hawking who also suffers from ALS, cost $10,000-$20,000. “Our team worked hard and created a device that costs in the $100-150 range and already delivers 8-12 WPM,” he adds.

Keeping the WPM as high as possible was one of the biggest challenges the engineers faced, says Patil. “We would like to have 20-25 WPM and we are now in the range of 8-12 WPM. We want to go to 20+ WPM in the next iteration.” A goal, he is optimistic, they will reach soon.

The head-mounted TAALS communicator tracks the eye movement and converts that into speech. Image: TA-ALS.org

Global Impact

After two years, the TA-ALS team of engineers now has a fully functional prototype that was developed using 3D printing and they are working with a team in India to mass produce the first version. The communicator has a decent rate of output from a conversational perspective and the next step will be interfacing it with social media.

Another key aspect of the TAALS communicator is that the device is highly customizable. Patients can customize the device on their own by changing the quality of the voice, output language, or display without any help, says Patil. “It’s almost like a virtual assistant guiding the patient through options they can pick. The nurse aid can also customize the software based on the patient’s needs,” he adds.

Tungare is also banking on the open source movement to translate the output into other languages so that patients can benefit globally. “We are hoping other engineers out there will help us customize this device based on different needs,” he says.

The TAALS communicator currently enables ALS patients to control their environment and communicate with the people in the room. Tungare is confident that soon they will be also be able to communicate digitally with people around the world. “My brother, who is already using the prototype, sends text messages and emails to me, which he hasn’t done in 2.5 years. We are able to hear his voice!”

As the TA-ALS team is moving closer to launch early next year and enlisting doctors and hospitals to get the device into the hands of patients, it’s showing that where medicine is still struggling, technology is raising hope for patients with ALS.

We are hoping other engineers out there will help us customize this device based on different needs.

Sandeep Tungare, founder, TA-ALS


October 2014

by Chitra Sethi, Managing Editor, ASME.org