04:51pm Wednesday 20 September 2017

Fighting ALS with mind, hand, and heart

Meg Murphy | School of Engineering

When Bobby Forster proposed to his girlfriend, they were both covered in beads and face paint, among the hordes at Mardi Gras in New Orleans. He dropped to one knee; she said yes. In an instant, he was on his feet, wrapping his arms around her. They kissed for so long the revelers, hooting for them, ran out of breath.

That was less than two years ago. A few months prior he had been diagnosed with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, an affliction that methodically destroys the nerves that control your muscles. His life has flashed by since then: an engagement; a wedding; a series of fundraisers; advocacy work — and a rapid degeneration of his body’s ability to move and to speak. Forster is 27 years old.

Enter Pison Technology, an MIT startup with four members, including Forster. On a recent evening, the team gathered to advance a novel idea that, if successful, will help people with ALS engage with the world around them. Kneeling by Forster’s wheelchair, David Cipoletta, a robotics engineer, placed electrodes along his right arm, counted to three, and told him to flex. Forster’s arm remained motionless — but on a nearby laptop, waves on the screen tracked electrical signals in his muscles. When he thought about raising his forearm, the waves shot upward.

“Yes, I see it. We’re getting there,” said Dexter Ang ’05, a student at the MIT Sloan School of Management and a graduate in mechanical engineering. It was Ang’s idea, inspired by a remark made by his mother, to tap into the nerves of people with ALS using electromyography, or EMG, sensors and create a device that can translate those nerve signals into operational commands.

In practice, it would look like this: People with ALS wear wireless electrode pads on either their jaws, biceps, or thighs. The pads, which are equipped with small sensors, signal a device that is widely compatible with assistive and other technology. The new equipment — wireless and wearable — enables people with ALS to control an array of things, such as a computer, a phone, or a wheelchair.

Driven by this possibility, Ang assembled the startup team, which along with Forster and Cipoletta, includes Wenxin Feng, a PhD student in human-computer interaction at Boston University. From the outset, the project has drawn support.

Most recently, Pison Technology received $25,000 from the MIT Sandbox Innovation Fund Program. Influential MIT alum Brian Rosnov, head of the Philips Digital Accelerator in Cambridge, Massachusetts, a founding corporate sponsor of Sandbox, is actively mentoring the team.

“What I see in Dexter is a new hope for people with ALS around the world,” says Rosnov. The startup is on the right track, he said, with promising early results and feedback. Ang has drawn on pivotal resources, such as Sandbox, with amazing results. “Dexter has rallied the entire community around the needs of ALS families and his mission,” he says.

Pursuit of Ang’s vision, however, will require significantly more funding, along with a great deal of tenacity. He is ready. It’s a fight he takes personally.

The cost of communicating

Last fall, Ang lost his mother to ALS. He witnessed her try, and fail, to communicate using eye-tracking technology, which employs sensors that enable a device to follow exactly where a user is looking. Only about 10 percent of people living with ALS have the stamina and patience to take advantage of it. Forster is among them. He uses the technology to turn his gaze into words. It is painstaking work. At eight words per minute, he is faster than most. A male voice with an Australian accent (reminiscent of Crocodile Dundee, a testament to Forster’s intact sense of humor), delivers his messages with panache. Such systems not only make Herculean demands on their users, they cost about $17,000 and are often not covered by insurance. Forster’s was donated to him by a nonprofit. Like so many others, he could not have afforded it otherwise.

Ang wants to find a better way. He uprooted his life to do so. He left behind Chicago, the city he adopted after graduation and before his mother grew ill, and made a clear-cut decision. Instead of returning to the world of high-frequency trading, where he used complex algorithms to analyze markets and earn a high paycheck, Ang came back to MIT to learn more, live on his savings, and launch a startup that he hopes will make a difference in the world — or, to be more precise, draw people who are imprisoned by ALS back into it.

The advance he envisions holds vast potential. Patient information about the strength of their nerves and muscles could be tracked to a degree that was previously impossible. Neurologists could monitor how nerves are being affected, and better watch for disease progression. Just as important as its clinical applications and the freedom it could give to patients, Ang says, is its potential availability. At under $500, it will remove a major hurdle.

“We are going to develop the most effective technology possible. We want every person diagnosed with ALS to receive it from their neurologist at the time of diagnosis and, in essence, be told: ‘Here is something that can help you from the beginning until the end,’” said Ang.

One in every 300 men and 1 in every 800 women in the U.S. will be diagnosed with this affliction, according to the ALS Association. Life expectancy after diagnosis is two to five years. These are statistics that Casey Forster has memorized, a sliver of the information she has absorbed since her husband was diagnosed. The cruelty of the disease is stunning.

Now as she watches members of the startup team bustle around Forster, she lets out a sigh. “A year ago, Bobby could still walk and talk. He walked me down the aisle,” says Casey.

Looking over at Ang as he speaks softly to Forster, she shakes her head. Ang’s mother died shortly before they met within the ALS community, which is small and tight. “If I lost Bobby, I don’t know if I could put myself right back into this environment with other ALS patients. Especially not right away,” she says. “But Dexter has gone all in. His connection to the community is incredible. His drive to help, to make a breakthrough, is tireless.”

“Step 2 out of 300”

In this particular meeting, the startup team is addressing an early-stage problem: proof of concept. Few, if any, in the medical field have studied surface EMG signals in people with ALS. There has been no apparent reason to do so. So, the first challenge is to consistently demonstrate the reliability of such signals.

“Now flex. Good. See it?” Ang says, a common refrain for nearly three hours. Neither Ang, nor Forster, nor the rest of the team, appear to notice the time. Their test results are proving a cause for optimism, but they are far from definitive. When Forster is cued, the waves on screen often show a surge of electrical activity, but not always.

“Wait, look at that,” Ang says, two hours in — “see how the reading is changing. Bobby, are you doing something different?” Using the eye-tracking screen, Forster declares he is making a fist rather than flexing his arm.

“Let’s think about it. Let’s work the problem,” Ang says with excitement. “That motion requires significant muscle activity — you’re activating more nerves. A lot more neurons. Let’s focus on that.”

Forster is looking from key to key on the screen before him. Ang waits patiently. “I am going to read up on the best pathways for the next time we meet,” Forster writes.

One challenge down, hundreds to go. “We are at step 2 out of 300 — that’s how I think about it,” Ang says. “This is a really hard problem. If this journey wasn’t worth it, we wouldn’t be doing it. But it is.”

Listening intently, Forster uses his eye-tracking technology to type out: “What we are doing will significantly change the lives of people living with ALS.”

Ang has set an ambitious timeline for the team. Over the next two months, they hope to raise $300,000 for research and development, which marks only a fraction of what they will need over time. By October, they aim to have a working prototype to present to the ALS Association. “That’s our first major milestone,” says Ang. “I know we have the right team. If anyone is going to build this, it’s going to be us.”

The urgency is plain to Casey. She wants to take in all that her husband has to share. For now, she sits nearby, and runs her fingers along the beads of a costume necklace. It features a perfectly gaudy plastic pendant that reads, in green on neon yellow, “Will you marry me?” A playful gift from Forster from that proposal at Mardi Gras.

She tells the engagement story and, as she does, Forster’s eyes move to her. His concentration — flex, hold, stop — breaks, and it takes the team a minute to see why. His mind is with his wife. Now she is describing when they first met, and how much prodding it took, on her part, before Forster asked for a date.

As she begins to share another memory, the familiar digital Australian voice announces: “Sorry, you know I have no game.” This is clearly a joke between them, and she smiles.

Ang says that Pison Technology is operating on a premise so basic to life that it’s rarely articulated: human communication matters. All people with ALS, not just a fraction, need a means to connect. The practical reasons for this are clear and the emotional ones, they must be felt.

MIT


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