New $400,000 Grant Supports EverythingALS.org and Mass General Hospital (MGH) to Develop NeuroLens, a Digital Diagnostics technology initiative for early detection of Amyotrophic Lateral Sclerosis (ALS)

Supporting a Patient-Led Movement to Diagnose ALS Early

SEATTLE--(BUSINESS WIRE)-- EverythingALS today announced it has received $400,000 from ALS Finding a Cure® and The ALS Association to support studies for the identification of early digital diagnostic markers of ALS. The NeuroLens digital diagnostics program is a unique partnership with diverse and multidisciplinary research teams formed between - EverythingALS, a citizen led nonprofit research organization dedicated to changing the paradigm for ALS through AI/ML, digital monitoring and open innovation, and the Sean. M. Healey and AMG Center for ALS at Massachusetts General Hospital (MGH) with a goal of identifying the earliest signs of ALS in order to enable intervention as soon as possible by monitoring pre-symptomatic ALS gene carriers.

ALS is a rare and terminal neurological disease that robs people of their ability to move, speak, and eat in just a few years. ALS diagnosis takes on average 12 to 18 months and we aim to change that.

The two-year grant supports NeuroLens Digital Diagnostics, a de-centralized and open innovation platform to digitally monitor (remotely, continuously, and frequently) pre-symptomatic gene carriers who are at high-risk of developing ALS, and their blood relatives. The pre-symptomatic gene carriers and blood relatives will be monitored, without the need to visit a medical facility/neurologist, using sensors to measure functional changes such as walking, climbing, speaking, cognition, and using videos to capture subtle facial changes. The data from this comprehensive monitoring will be used to identify early diagnostic markers of ALS. The open innovation concept is leveraged by the larger communities of AI engineers, researchers, and neurologists to spur progress in finding early digital diagnostic markers.

“A key barrier in early diagnosis for ALS is that at-risk individuals may be located far from specialized academic neurology centers and traveling for regular in-person examinations may be burdensome. Remote monitoring using digital sensors offers a solution to identify individuals around the world with early signs of ALS who could then be referred for evaluation by an ALS specialist,” said Dr. Mark Garret, Director of DIALS and PREVENT ALS at MGH. He continues, “This work will have a very real impact and accelerate the research being conducted by our team at MGH and others.”

“We’re thrilled to launch the NeuroLens digital diagnostics initiative and the grassroots efforts to build and strengthen the ALS community and encourage collaboration across groups working toward the shared goal of finding early diagnosis of this devastating disease,” said Indu Navar, Founder of EverythingALS; “this open source organizing model for ALS could be transformational as we can share data and collaborate with thousands of researchers and AI engineers. This brings hope to the ALS community and their loved ones who are tackling enormous challenges and hoping for movement and momentum.”

ALS researchers interested in tapping into the NeuroLens ALS Initiative can visit www.everythingals.org or contact neurolens@everythingals.org to apply for this program and learn more about leveraging the open data available to pursue early diagnosis for ALS.

About EverythingALS

EverythingALS.org is a patient-focused non-profit, part of Peter Cohen Foundation, a 501(3)c organization, bringing technological innovations and data science to support efforts -- from care to cure -- for people with ALS, by offering an open-data platform for direct engagement with patients, caregivers, researchers, and drug companies. For more information, please visit http://www.everythingals.org/.

About ALS Finding a Cure^®

ALS Finding a Cure^® is dedicated to being a game changer in discovering a cure for this fatal disease. Founded in 2014 by noted philanthropist and Conair Founder and Chairman, Leandro P. Rizzuto, as a tribute to Christie Rizzuto, his daughter-in-law who was diagnosed with ALS in 2009 at the age of 41, and under the leadership of Denis Rizzuto, Peter N. Foss, and a team of renowned ALS researchers, ALS Finding a Cure® is focused on identifying the gaps in the scientific understanding of ALS that are preventing the development of a cure. The organization, a program of The Leandro P. Rizzuto Foundation, collaborates with a wide range of companies, ALS organizations, other disease research organizations, and ALS patients and families to ensure research efforts are non-duplicative, synergistic, and focused on the ultimate goal: finding a cure.

About The ALS Association

The ALS Association is the largest philanthropic funder of ALS research in the world. The Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association is working to make ALS a livable disease while urgently searching for new treatments and a cure. For more information about The ALS Association, visit our website at www.als.org.

About the Sean M. Healey & AMG Center for ALS at Mass General

At the Sean M. Healey & AMG Center for ALS at Mass General, we are on a quest to discover life-saving therapies for all individuals affected by ALS. Launched in November 2018, the Healey Center leverages a global network of scientists, physicians, nurses, caregivers, people with ALS and families working together to accelerate the pace of ALS therapy discovery and development.

Under the leadership of Merit Cudkowicz, MD, and a Science Advisory Council of international experts, we are reimagining how to develop and test the most effective therapies to treat the disease, identify cures and, ultimately, prevent it.

The key to our success is our tightly integrated research and clinical efforts, encouraging opportunities to bring the challenges our patients face every day into our laboratories, focusing investigations on finding solutions that will make a meaningful difference to our patients without delay. Our collaborative efforts are designing more efficient and effective clinical trials while broadening access to these trials for people with ALS.

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