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ASU event to showcase how the arts can help people cope with disease

An aging U.S. population means more neurological disease diagnoses.
ASU event to feature 'Endgame Project' screening, Q&A with actors and director.
April 1, 2017

'Endgame Project' film documents veteran actors' daily trials with Parkinson's

There are 5 million Americans living with Alzheimer’s, 1 million with Parkinson’s and nearly half a million with multiple sclerosis. And with an aging U.S. population, it’s likely those numbers will increase, making learning how to live with such neurodegenerative diseases essential.

This week an event organized by Patrick Bixby, associate professor of English at Arizona State University, will showcase how two veteran actors have been doing just that, with a special preview screening of a film that documents their daily trials with Parkinson’s disease while continuing to do what they love. The screening will bring together health care providers, university faculty, potential donors and other stakeholders at 6 p.m. Thursday, April 6, at the Beus Center for Law and Society on the Downtown Phoenix campus.

“The Endgame Project” follows Dan Moran and John Christopher Jones as they put together an off-Broadway production of Samuel Beckett’s tragicomedy play “Endgame,” an already demanding task, while also contending with physical therapy, doctor visits and medication regimens.

“Their story offers encouragement and insight for the growing number of people directly impacted by Parkinson’s disease,” said Bixby, who works in the New College of Interdisciplinary Arts and Sciences, “and, just as important, it provides the general public with a model for understanding and appreciating those with neurodegenerative conditions.”

Neurodegenerative diseases are characterized by the progressive degeneration of brain cells that make normal functions like physical movement and memory increasingly difficult. They are incurable. Parkinson’s in particular affects posture and balance, automatic movements and facial expressions, speech cadence and voice inflection — tools that are indispensable to actors.

As fate would have it, Moran and Jones, who had known each other since sharing a dressing room on a Broadway play in 1995, were diagnosed with the disease at nearly the same time, more than a decade ago. Both were determined to go on working at their craft but watched as opportunities dwindled upon making their diagnoses public — until Moran rediscovered an old copy of Beckett’s “Endgame.”

film screening poster

The characters in the two-man play resonated with him anew: one is described as having a stiff, shuffling gate, while the other is blind and uses a wheelchair. Moran pitched the idea of performing the play to Jones, who readily signed on.

“The diminished circumstances of the characters, along with their persistent desire to go on, felt to Dan like his own circumstances, confined to a body that would no longer do what it once could,” Bixby wrote in an article about the project. “The play not only spoke to their circumstances, it presented them with new opportunities. Who could understand these characters better? Who could embody these characters more fully? Suddenly, their symptoms were no longer obstacles to their work; they were integral to it.”

The film screening will be followed by a Q&A session with Moran and Jones. The next day, both actors will also visit the Muhammad Ali Parkinson Center at the Barrow Neurological Institute to discuss their experiences and share their insights with patients and health care providers.

Darolyn O’Donnell, recreation therapy coordinator for the Ali center, said the center recognizes the role arts can play in coping and healing with diseases like Parkinson’s, and offers dance, painting and music classes.

“We focus on what you can do … on independence and maintaining quality of life,” she said. “These actors are living proof” that it can be done.

The culmination of “The Endgame Project” events will be the creation of the Network for Arts, Humanities, and Neurodegenerative Care, an online network where Parkinson’s patients, their families, caregivers, health care professionals and members of the community can connect to foster innovative partnerships and activities.

David Coon, associate dean and professor at ASU’s College of Nursing and Health Innovation, who provided support for the event, said he expects it will broaden people’s views of living with a disease.

“I think it will help folks see from multiple perspectives about how someone else faces the journey and engages with life and works to maintain a quality of life across a chronic illness,” he said.

To attend the film screening, register here. Find additional information, including a map, here. For more information about the meet-and-greet with the actors at the Muhammad Ali Parkinson Center, call 602-406-4931.

 

Top photo: Dan Moran as "Hamm" (left) and John Christopher Jones as "Clov" in a production of Samuel Beckett's "Endgame." Photo by Peter Angelo Simon.

 
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Creators of wearable tech for visually impaired win ASU Innovation Open

Somatic Labs gets $100,000 to produce wearable tech for visually impaired.
April 2, 2017

Three entrepreneurs say they have 230 preorders for Moment device

Three young men who met five years ago as Flinn Scholars and launched an entrepreneurial venture won $100,000 on Sunday to fund their project, which makes wearable technology for people with visual impairments.

Shantanu Bala and Ajay Karpur, both graduates of Arizona State University, and Jacob Rockland, a senior at the University of Arizona, created Somatic Labs, which won the first ASU Innovation Open competition this past weekend. The three met during networking events for winners of the Flinn Scholarship, a prestigious, merit-based program for Arizona high school graduates to attend one of the three state universities.

The $100,000 investment will get the team closer to filling orders for Moment, their wristband device that uses “haptic,” or touch, technology to turn information into finely tuned vibrations.

The competition began last year with 33 student-led teams applying from several states and was narrowed to 15 semifinalists in February. The finalists pitched at Sunday’s “Final Four Demo Day” event, held at the Beus Center for Law and Society at ASU’s Downtown Phoenix campus. The contest was sponsored by Avnet, which donated the prize money, and the Ira A. Fulton Schools of Engineering at ASU. Additional sponsors were Draper University, Zero Mass Water, Hool Coury Law and SRP.

The other ASU team that was a finalist, Swift Coat, won the $10,000 SRP Innovation Award. Swift Coat, a delivery system for nanoparticle coatings, similar to an aerosol spray nozzle, was launched by Zak Holman, an assistant professor in the School of Electrical, Computing and Energy Engineering, and Peter Firth, a PhD student at ASU. They’ve already drawn $3 million in federal funding and also won the $45,000 New Venture Challenge at ASU last year.

The other two finalists were RepWatch, made of three students from California Lutheran University, and Nunami Labs, created by three University of Arizona students. RepWatch created a platform and wearable device to enhance physical therapy for patients. Nunami Labs is developing 360-degree sensors for driverless cars.

All four teams won $5,000 for advancing to the final round.

Bala, a 2014 graduate who double majored in psychology and computer science, and Karpur, a 2016 grad in electrical engineering, worked at ASU’s Center for Cognitive Ubiquitous Computing on projects to help people with disabilities. Somatic Labs came directly out of that experience.

“A lot of what we were doing day to day was working with people who were blind or visually impaired, and a lot of them were ASU students,” Karpur said. “The process involved a lot of direct interaction with the people who would be using this technology.”

During the pitch, Bala said the team already has 230 preorders for the $199 Moment device and one patent. The $100,000 investment will speed the process of filling the orders, which Somatic Labs hopes to do by June.

“We’re starting with people who have visual impairments because they needed this technology yesterday,” said Bala, who won a $100,000 Thiel Fellowship to research haptics.

As the orders came in, the three entrepreneurs talked to customers with visual impairments, and one man described how, when he wanted to know who was calling him, he had to have an audio notification.

“Even as simple as checking what time it is involves cranking up the volume and having the phone yell out the time,” Bala said.

“If someone is calling, you’ll hear something like, ‘Your mom is calling, your mom is calling,’ in the middle of a meeting or in class.”

Moment communicates tactilely. For example a visually impaired person who is walking down the street and approaching an intersection will feel a sensation on her wrist. Different callers would have unique sensation patterns on the user’s wrist.

Users download an app on their smartphones to sync with Moment. The device works with applications such as Facebook and Twitter, but it’s built so that anyone can make an app to interface with it for free. It includes an accelerometer, gyroscope and magnetometer to calibrate and provide interactive feedback.

Bala said the team is constantly updating its prototype — even as often as every few days.

“We’ve fabricated our own plastics, made our own circuit boards, wrote all our own software over the last year. We do all our own marketing and design.

“We built this company from the ground up.”

 

Top photo: Designers of wearable technology for the visually impaired, Somatic Labs team members — Ajay Karpur (left) and Shantanu Bala of ASU, and Jacob Rockland of UofA — won the top prize at the ASU Innovation Open on Sunday at the Beus Center for Law and Society in downtown Phoenix. They took a moment to collect themselves after picking up the $100,000 award and championship belt. 

Mary Beth Faller

reporter , ASU Now

480-727-4503