NewsNov | 3 | 2022
Sean M. Healey & AMG Center for ALS at Mass General Awards annual 2022 Gupta Family Endowed Prize for Innovation in ALS Care to ALSUntangled
Richard Bedlack, M.D, PhD accepting the 2022 Gupta Family Endowed Prize for Innovation in ALS Care from Merit Cudkowicz, MD, MSc, on behalf of ALSUntangled
The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital (MGH) awarded the annual 2022 Gupta Family Endowed Prize for Innovation in ALS Care to the team from ALSUntangled for their work in facilitating more informed decisions treatments for ALS. The prize was presented to the team during the 21st Annual Northeast ALS Consortium (NEALS) Meeting in Clearwater Beach, FL by Dr. Merit Cudkowicz, Director of the Healey & AMG Center for the Gupta family.
ALSUntangled was created by Richard Bedlack, M.D, PhD, Professor of Neurology at Duke University and Director of the Duke ALS clinic. The program has three parts: inputs, reviews and outputs. People with ALS are now able to send their ideas for reviews via email or at an in-person clinic visit with an ALSUntangled team members. The team prioritizes ideas by a combination of votes from the community and also a multiplier reflecting the amount of useful disclosable information the team can find on a product. ALSUntangled has a team of 130 clinicians and scientists from across 11 countries working on these reviews.
"Early in my career I recognized that most people living with ALS were buying and trying alternative and off-label products off the Internet. Internet information about these products was not always complete or even accurate. I started ALSUntangled to try and help people with ALS make more informed decisions about these products” said Dr. Bedlack. "Newer changes include the creation of podcasts about each review, translation of the podcasts into Italian, and translation of the entire website into Spanish. We hope these will make our program more accessible to different groups of patients around the world."
“The work of Dr. Bedlack and the ALSUntangled team provides a critical resource to people living with ALS and met the review criteria of being accessible, scalable and important for care , said Merit Cudkowicz, MD, MSc, Director of the Healey Center and chief of Department of Neurology at MGH. “We are grateful to the Gupta Family for making this prize possible to recognize idea sharing, innovation, and forward thinking on scalable ongoing and ground-breaking projects like ALSUntangled that have directly improved ALS patient care.
"I’ve learned so many lessons from running this program. Some of the products themselves really are promising as ALS treatments and warrant further investigation. ” said Dr. Bedlack.
"This is one of the most meaningful awards I have ever received because I prioritize patient care above all else in my career, and because people living with ALS were part of the selection process."
The Gupta Family Endowed Prize for Innovation in ALS Care is a global prize to honor ground-breaking new approaches that lead to exceptional care for individuals living with amyotrophic lateral sclerosis (ALS). This annual prize is awarded to a nominated team who has developed promising new approaches to improving care for people living with ALS. The goal of this prize is to encourage idea sharing, innovation, and forward thinking on scalable ongoing and ground-breaking projects that have directly improved ALS patient care.
For more information about the Sean M. Healey and AMG Center for ALS, please visit the website.