Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), today announced a $600,000 grant to be awarded to the New Jersey Institute of Technology (NJIT) and Talem Technologies (Talem) as part of the organization's ongoing exploration of robotic technology to assist people living with Duchenne. PPMD is funding a two-year study to incorporate NJIT's technology—an embedded computer, software, a force sensor and a motor—as an add-on to an existing passive, spring-loaded device developed by Talem Technologies founder Blake Mathie as a zero-gravity support for people with Duchenne.
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in every 5,000 live male births. PPMD has been an early funder of several robotic programs that strive to improve the quality of life for people with Duchenne. Robotic technology is about building strength in a disease that robs people of the ability to perform everyday tasks that most of us take for granted.
The upper-extremity exoskeleton developed by Detroit-based Talem Technologies will be further refined in collaboration with biomedical engineers at NJIT to accept the university's modular robotic assistance technology. The device would be the first of its kind to provide intuitive robotic guidance controls and motorized assistance to people with Duchenne, allowing them to continue to use their arms as their muscles weaken.
Starting this week, the study leaders—Dr. Richard Foulds and Madeline Corrigan from NJIT and Blake Mathie from Talem Technologies—will begin recruiting up to 30 non-ambulatory participants living with Duchenne from across the country to use the device and report back regularly on their experiences incorporating it into their daily lives.
People with Duchenne lack the protein dystrophin, which acts as both the glue that holds muscles together and a shock absorber that allows them to contract and relax without being damaged. Without dystrophin, their muscles are not able to repair themselves from the tiny tears that occur on a daily basis with normal usage. People with Duchenne progressively lose strength, making it increasingly difficult to walk and to lift objects.
PPMD provided Talem Technologies a similar grant in 2015 that allowed Talem the ability to first test the X-Ar passive arm support with patients. This newest grant was a natural next step in the formation of promising exoskeleton technology, according to PPMD's founding president and CEO, Pat Furlong.
"PPMD has always supported innovation. We are thrilled that the teams at NJIT and Talem Technologies have come together to further enhance this exciting device. They have listened to patients and continue to make updates. We believe this exoskeleton technology has the ability to spare muscle deterioration keeping people with Duchenne stronger for longer and has the potential to assist everyone living with Duchenne," says Furlong.
Furlong continues, "PPMD's robust research pipeline will continue to focus on new and leading therapeutics that carry with them the potential to end Duchenne. But we need to simultaneously support innovative technology that will maintain muscle strength and ultimately independence. We believe that the technology being developed under this project is an example of that kind of innovation."
NJIT's technology uses what is known as admittance control, a robotic control paradigm in which the motion of the robot is controlled by the magnitude and direction of the forced applied by the user's arm. Compared to passive arm supports that require the user to have sufficient strength to move them, admittance controlled devices significantly minimize friction and inertia and provide more precise compensation against gravity, reducing the exertion necessary to move a limb, particularly vertically.
Participants in the study will receive a pair of wheelchair-mountable passive arm supports to be used regularly inside their homes, as well as in classrooms, workplaces and other community settings. After a few months, each participant will receive a modular upgrade to partially motorize their arm support.
"We will start with the passive device and then seamlessly add vertical assistance as an initial step - our studies show this is often the first degree of freedom to be limited in the case of progressive diseases - operated by force sensor, embedded computer and motor," said Foulds, co-director of NJIT's Rehabilitation Engineering Research Center and the principal investigator of the study.
Mathie called modularity a core principle of the device, which Talem plans to commercialize. "Not everyone needs a car with all the bells and whistles, nor a barebones model. What they need today may not be what they need tomorrow and so we are developing this device to serve the widest population possible, adding assistance as it is needed," he says, adding, "Wheelchairs provide freedom for people who have lost the use of their legs to go where they want, but they don't give them the independence to do what they want once they get there. This technology is designed to give them that independence."
NJIT and Talem Technologies met in April 2015 at a meeting convened by PPMD for Duchenne stakeholders from around the world to discuss the robotic technology and the potential it holds for the community. PPMD—together with UPPMD—gathered the best and brightest robotics experts and engineers who were working at the time to apply their innovations to Duchenne.
Madeline Corrigan, a doctoral candidate in biomedical engineering and co-principal investigator of the study, enrolled at NJIT with the express purpose of creating devices to help individuals with muscular dystrophy. "Based on my personal connection to the Duchenne community, I was committed to developing assistive technology that would provide a greater degree of independence for these individuals," she says. After working with Foulds on an early prototype using a fully motorized, wheelchair-mountable reaching and grasping robot, the two established a novel approach to upper extremity exoskeleton design: motorization of commercially available passive arm supports using admittance control.
"By implementing modular upgrades to a passive arm support, we can provide the user with assistance as needed, based on their capabilities. And, as is especially important for individuals with Duchenne, we can increase the amount of assistance as the user's capabilities change over time," she noted.
Zachary Smith, the first person with Duchenne to use the device, leapt at the chance to try it and has now become an integral part of the study. "Eating started to become challenging and I was struggling to brush my hair and teeth—the basic stuff people can do. I knew I was losing my arm strength and it scared me because I had already lost the ability to use my legs," he recounts. "So I got on my computer, started searching for exoskeletons, and e-mailed a company developing the technology. I thought that if it were used in factories to reduce workers' muscle fatigue, why not on a wheelchair."
Four years later, he is now the dissemination consultant for the NJIT/Talem project, responsible for outreach with participants, responding to their concerns and questions via Skype from his Florida home.
His own goal, Smith says, is to retain his arm strength as long as possible, "I want to be more independent. Rather than asking my parents and sister I want to do more things on my own," says Smith, noting that he is now able to play fetch with his dog and ping pong with his grandfather. "But I also want to show other people that just because you have a disease doesn't mean you can't do things," he says. "People should preserve this ability as long as they can. I want to show them they can help themselves."