Parent Project Muscular Dystrophy and Solid Ventures Partner on Solid Suit Assistive Device for Duchenne Muscular Dystrophy

The “Solid Suit” is actually designed to be soft, like the one pictured above, and could be worn by people with DMD under their clothes.

Hackensack, N.J. based nonprofit Parent Project Muscular Dystrophy (PPMD), which is dedicated to fighting and eventually prevailing over Duchenne muscular dystrophy (Duchenne), has announced a new collaboration with Solid Ventures (Solid), of Cambridge, Massachusetts, a biotech company that focuses on identification, development, and acceleration of Duchenne treatments. The partners will engage with SRI International in research and development of the “Solid Suit” — an innovative assistive device for Duchenne patients.

Duchenne muscular dystrophy is the most common childhood-diagnosed genetic disorder. It afflicts roughly 1 in every 3,500 to 5,000 males born in the United States (some 20,000 new cases annually, and an estimated 300,000 sufferers worldwide), who will usually experience progressively more severe muscle weakness which will eventually confine them to a wheelchair in early adolescence, leading eventually to full paralysis, difficulty breathing, heart failure, and ultimately premature death, which typically occurs in the mid-to late 20s. Diagnosis usually comes between ages 3 and 5 due to pronounced muscle weakness manifesting. The disorder, which occurs across all races and cultures, is caused by mutated dystrophin genes, which encode the dystrophin protein whose function is to connect muscle fibers to surrounding external matrixes thereby preventing injury. Although certain medical treatments may help slow Duchenne’s progression, currently there is no cure and there are no approved treatments on the market.

However, SOLID, whose scientific expertise and strong financial backing allows it to thoroughly assess programs through rigorous scientific analysis, commercial diligence and global collaborations in order to ensure that investment dollars are wisely deployed, says it has detected a shift in the Duchenne’s development landscape, affirming that there are several treatments in various clinical trials stages, with many more therapies coming down the pipeline which with focused direction combined with the the right momentum, have potential to benefit many young lives.

Duchenne sufferers are nearly always boys because of the dystrophin gene’s being located on the X chromosome. A girl would need to inherit two faulty dystrophin gene copies, highly improbable because male carriers often die in early adulthood. The disease is heritable, but some 35 percent of cases are attributable to random spontaneous mutation.

SRI International is an industrial research and development firm that specializes in bringing its innovations to market through technology licensing and spin-off ventures and new products.

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The Solid Suit idea evolved from SRI’s pioneering development of cutting-edge military technology robotics originally conceived and designed to overcome muscle fatigue and enhance muscle strength in soldiers. However, PPMD and Solid now hope that the Solid Suit will enable people living with Duchenne to eventually use such a device in executing day-to-day activities facilitated by Solid Suit’s assistance with muscle function and enhancement of muscle preservation.

The Solid Suit is projected as a soft-textured, wearable, assistive device for people with Duchenne and Becker muscular dystrophy that could conceptually be worn under the patient’s clothing – next to his/her skin (think of suits worn by superheros like Spiderman). However, at the current stage of development, it has not yet been determined whether the end product will be a full body suit, an upper body suit to enhance upper body function, or a lower body suit to enhance lower limb function and mobility.

The initial The Solid Suit Project feasibility evaluation will take place in three stages, the first of which launched at the beginning of December with a go/no-go decision expected within 12 months.

Research performed with cooperation from Duchenne clinicians as well as from patient community volunteers will set the pace of SRI’s prototype development activity, the ultimate objective being to provide widespread access to the potentially life-changing technology. The PPMD – Solid partnership began to gel after a conference involving a meeting of the minds of small, diverse group of world-renowned robotics engineers with Duchenne specialists in assessing assess the Solid Suit’s potential to benefit the Duchenne community.

Pictured from left to right: Stanley Nelson, MD, Center for Duchenne Muscular Dystrophy at UCLA, Thomas Sugar, PhD, Arizona State University Polytechnic School, Tom Egan, SRI International, Roy Kornbluh, SRI International, Laura Case, DPT, Duke University School of Medicine, Keith Van Houten, Annie Kennedy, Parent Project Muscular Dystrophy, Matt Arnold, Solid Ventures, Lee Sweeney, PhD, University of Pennsylvania, Tina Duong, DPT, Children’s National Medical Center, Annie Ganot, Ilan Ganot, Solid Ventures, Eytani Ganot, Andrey Zarur, PhD, Solid Ventures, Brenda Wong, MD, Comprehensive Neuromuscular Center, Cincinnati Children’s, Rich Mahoney, SRI International, Gilad Hayeem, Solid Ventures, Elliott Rouse, PhD, Rehabilitation Institute of Chicago, Joel Schneider, PhD, Solid Ventures) – Photo credit: Parent Project Muscular Dystrophy

PPMD’s Founding President and CEO Pat Furlong comments that “Daily, we are in contact with families and patients at all stages of Duchenne progression. Their primary goal, second only to a cure, is to preserve muscle function so that daily tasks that most of us take for granted are not just easier, but doable. Solid CEO and founder Ilan Ganot and his team have quickly become trailblazers in the Duchenne space, analyzing the landscape and figuring out where to spend resources for the best result. At PPMD, we have taken a similar approach over the last 20 years, so combining forces to partner with SRI on the Solid Suit just makes sense. We are thrilled to partner with Solid and SRI. We are excited to explore the potential this may have to extend a child or young adult’s physical abilities such as walking, brushing their teeth, controlling their joystick, or giving hugs.”

Solid notes: “Our heart is in it. Patients cant wait, nor will we. If a program shows promise, we propel forward; if it doesn’t, we quickly move on to the next.

For more about the Solid Suit, see:
https://community.parentprojectmd.org/profiles/blogs/the-solid-suit-combining-forces-to-enhance-strength/

For more information about Solid Ventures and their approach to Duchenne treatment, visit:
https://www.solid-ventures.com/

For more information about SRI International, see:
https://www.sri.com/

Parent Project Muscular Dystrophy:
https://www.parentprojectmd.org

Sources:
Parent Project Muscular Dystrophy
Solid Ventures
SRI International

Image credits:
Parent Project Muscular Dystrophy