The ALS Association

ALS Ice Bucket Challenge Progress
Carrie Munk
The ALS Association



The ALS Association in Partnership with ALS Finding a Cure® and Massachusetts General Hospital Invests $3.6 Million to Expand the NeuroBANK™ Program

Washington, D.C. (August, 4, 2016) — The ALS Association is pleased to announce funding for expansion of the NeuroBANK™ program, which provides infrastructure and core services to the international ALS research community to accelerate patient-centric clinical research. The total funding commitment of $3.6 million is provided in partnership with ALS Finding a Cure® and Massachusetts General Hospital (MGH), as part of the ALS Accelerated Therapeutics (ALS-ACT) Initiative launched by the organizations in 2014.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which leads to total paralysis and death, usually within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure, and only one drug approved by the U.S. Food and Drug Administration (FDA) modestly extends survival.

The new grant, given to the MGH Neurological Clinical Research Institute (NCRI) with Alexander Sherman as Principal Investigator, builds on the successful completion of the initial development of NeuroBANK™ as an accelerated clinical research environment. This included creation of common data elements and standard operating procedures for use in clinical research, establishment of a neurological Global Unique Identifier, which uniquely identifies a person with ALS and links clinical data acquired across multiple studies to biobanks, image collections and patient-reported outcomes. Eight projects were successfully completed in the initial phase of the program.

Peter Foss, President of ALS Finding a Cure®, noted, “ALS clinical data is a valuable and largely untapped resource, so it gives us great satisfaction to enable the ALS research community to access this important information through our funding of NeuroBANK™.” Expansion of the NeuroBANK™ program will further facilitate the integration of information across research projects, and allow provision of core services including configuration and development, data management, user training and data analytics. This new phase will support up to 36 multi-site projects over three years. Availability of free services and standardized data from multiple projects, including large research studies like Answer ALS and Genomic Translation for ALS Care (GTAC), provided for worldwide use by clinicians, scientists and industry is expected to allow data mining at a level not previously available in ALS research, which may lead to better understanding of patient subtypes, clinical biomarkers of the disease and disease progression and responses to therapy.

“We are immensely grateful for the generous support from our visionary sponsors,” said Alexander Sherman, Director of Strategic Development and Systems at NCRI and the creator of NeuroBANK™. “Implementation of this project will advance ways to categorize people with ALS, develop new disease staging models, identify new pathways for treatment and introduce a crucial foundation for new clinical trials.”

“We are very pleased to be able to support expansion of the NeuroBANK™ program,” said Lucie Bruijn, Ph.D., M.B.A., Chief Scientist for The ALS Association. “The establishment of these cross-study resources has been a boon to research, and we anticipate that the growth of the program made possible by this new round of funding will greatly increase its value to the ALS research community. This has been a pivotal step to collaboration, data access and centralization of all the research activities engaging people living with ALS.”

About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.  For more information about The ALS Association, visit our website at

About ALS Finding a Cure®
ALS Finding A Cure® is a new research organization dedicated to being a game changer in discovering a cure for this fatal disease. Founded in 2014 by noted philanthropist and Founder and Chairman of Conair, Leandro (Lee) Rizzuto, as a tribute to Christie Rizzuto, Lee’s daughter-in-law who was diagnosed with ALS in 2009 at the age of 41, and under the joint leadership of Lee Rizzuto and Peter N. Foss, 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 non-profits, and ALS patients and families to ensure research efforts are non-duplicative, synergistic, and focused on the ultimate goal: getting to a cure. For more information about ALS Finding a Cure®, visit

ALS ACT is a novel academic-foundation-industry partnership to accelerate treatments for people living with ALS. In addition to The ALS Association and The ALS Finding a Cure Foundation, partners in ALS ACT include researchers from General Electric (GE) Healthcare and four academic NEALS ALS Consortium ( sites.

The Neurological Clinical Research Institute (NCRI)
The Neurological Clinical Research Institute ( at Massachusetts General Hospital accelerates translational research in neurological disorders through initiating and testing novel therapies. The NCRI has an extensive history in leading clinical research to find new treatments for neurological diseases including Amyotrophic Lateral Sclerosis (ALS), myasthenia gravis, diabetic neuropathy, stroke, multiple sclerosis, Parkinson's disease, and Huntington's disease.

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