Johns Hopkins University, Cedars-Sinai and Massachusetts General Hospital Announce Groundbreaking ALS Research Project of ANSWER ALS
Research Designed to Fully Understand and Defeat ALS; “Big Data” Technology Will Drive Unprecedented Analysis Capability
$20 Million in Funding from Committed Team of Donors, including the National Football League, the PGA TOUR, ALS Finding a Cure (a project of the Leandro P. Rizzuto Foundation), Travelers, The Fishman Family and The Bari Lipp Foundation
The Robert Packard Center for ALS Research at Johns Hopkins, Cedars-Sinai Medical Center’s Regenerative Medicine Institute and the Massachusetts General Hospital Neurological Clinical Research Institute today announced the launch of an Amyotrophic Lateral Sclerosis (ALS) research project of Answer ALS, the largest single coordinated and comprehensive effort to end ALS. ALS is a devastating, progressive and fatal neuromuscular illness for which there is no effective treatment. In ALS, gradual degeneration of motor nerve cells in the brain and spinal cord causes increased difficulty swallowing and breathing, and eventually leads to paralysis. A new person is diagnosed with ALS every 90 minutes in the United States.
The mission of Answer ALS is to:
“This is an unprecedented approach to understanding and defeating disease,” said Dr. Jeffrey Rothstein, Director of the Brain Science Institute and the Robert Packard Center for ALS Research at Johns Hopkins University and the Executive Director of Answer ALS. “This project will bring together world-renowned ALS research scientists to work against an aggressive timeline for understanding, treating and eventually finding a cure for this disease. The substantial initial funding from these generous supporters is a critical step forward in our effort to provide hope to those affected by ALS.”
“We are combining big data, comprehensive biological analytics, technology and science in a way that would not have been possible a decade ago,” said Clive Svendsen, PhD, Director of the Regenerative Medicine Institute at Cedars-Sinai Medical Center and Co-Director of Answer ALS. “What is so exciting and important is that all of this data will be made publicly available with free, open access to the ALS research community, so that we can make faster and greater strides together to find a cure for this disease.”
“By leveraging clinical and sample data collection systems built by the Northeast ALS Consortium (NEALS) with the support of the ALS Association and ALS Finding a Cure Foundation, enrollment of participants and sharing of data and samples will be accelerated,” said Merit Cudkowicz, MD, Chief of Neurology and Co-Director of the Neurological Clinical Research Institute at Massachusetts General Hospital and Co-Director of Answer ALS. “In partnership with our patients, their families and our NEALS research ambassadors, this collaborative project will accelerate finding treatments for people with ALS.”
The project will create the largest and most comprehensive foundation of ALS data ever amassed, encompassing clinical, chemical, genetic, protein, historical and biological data from an enormous sampling of ALS patients in the United States. In collaboration with machine learning and big data technology, the data will be mined to uncover ALS causes, subtypes, pathways gone awry and drug targets. This will establish a large and critical foundation for new clinical trials, develop new ways to categorize patients to identify specific druggable pathways and subtype biomarkers and disease pathophysiology to aid not only in early diagnosis of the disease, but also to monitor the efficacy of newly developed treatments.
This research project also could potentially provide deeper understanding of Alzheimer’s, Parkinson’s and other neurodegenerative diseases.
Funded by Committed Private Donors
Answer ALS originated as a result of the 2013 ALS Team Gleason Summit, which brought together leading researchers, patients, caregivers and advocates. One of the most significant outcomes of the Summit was a plan to urgently find a treatment or cure for ALS. The event was spearheaded by former NFL player Steve Gleason who lives with ALS and founded the ALS advocacy group, Team Gleason.
A funding effort led by the Leandro P. Rizzuto Foundation and the Robert Packard Center for ALS Research has resulted in $20 million raised for Answer ALS thus far. The initial stakeholder funders are the National Football League, the PGA TOUR, ALS Finding a Cure (a project of the Leandro P. Rizzuto Foundation), Travelers, The Fishman Family and The Bari Lipp Foundation.
Their funding will launch this research project in the coming months. A total of approximately $25 million is needed to complete the first phase of the program. Funding will be coordinated through the Robert Packard Center for ALS Research at Johns Hopkins University and Massachusetts General Hospital for the ALS Finding a Cure Foundation.
“I’ve always said, to change the course of this disease, as a community, we would have to be bigger than ALS,” said Gleason. “I believe that if we commit to this effort, on this scale, we will have meaningful results in our lifetime. Reaching this amount of fundraising success in such a short amount of time is inspiring. I dared capable individuals to step up and help solve ALS. These committed individuals and organizations have boldly answered that challenge.”
“The devastating impact of ALS was fully realized by the PGA TOUR’s extended family in 2004 when it tragically claimed the lives of caddie Bruce Edwards and member Jeff Julian, just months apart,” said PGA TOUR Commissioner Tim Finchem. “And now we learn that one of our dear friends and longtime associates, Jay Fishman of Travelers, has been diagnosed with ALS. We are extremely proud to lend our support to this concerted effort to finding a cure for this terrible disease.”
Jay Fishman, Chairman and CEO of Travelers, who recently announced his ALS diagnosis, said, “After being diagnosed with ALS, I looked for the most aggressive project with the greatest possibility of yielding results through rapid benchmarks and milestones. This was that project.”
Fishman continued, “The passion, commitment and collaborative spirit of this expert group of scientists and clinicians are nothing short of remarkable. I am deeply impressed by their knowledge and dedication.”
“To accelerate development of treatments for people with ALS, we brought together a remarkable team of scientists, a true powerhouse, to answer one of the hardest and most important questions in the biology of ALS,” said Peter Foss, President of the ALS Finding a Cure Foundation, and General Manager of the GE/NFL TBI research project. “We support open, collaborative science that tackles fundamental therapy-driven questions and includes real-time community sharing of data. This is the best approach to accelerate finding a cure for all people with ALS.”
To learn more about the Answer ALS program or to get involved, please visit www.answerals.org or call 1-800-490-2375.
Zofia Consulting is a proud supporter and partner of Answer ALS!