The Steve Gleason Enduring Voices Act is now law! This morning, President Trump signed the Bipartisan Budget Act of 2018 (H.R. 1892), which included the Steve Gleason Enduring Voices Act. The Act will permanently fix the current Centers for Medicare and Medicaid Services (CMS) policy limiting access to Speech Generating Devices (SGD) for people with degenerative diseases.
FORTITUDE-ALS is a clinical trial of an investigational oral drug for the treatment of amyotrophic lateral sclerosis (ALS). This clinical trial is now enrolling participants in both the United States and Canada.
We wanted to clear up some misinformation floating around on social media regarding our research funding and our current assets. We also wanted to explain our approach to funding research.
Biogen has acquired KPT-350, a potential ALS therapeutic that has been investigated in preclinical trials to treat ALS by researchers funded by The ALS Association’s Lawrence and Isabel Barnett Drug Development Program and The Milton Safenowitz Postdoctoral Fellowship Program, Karyopharm Therapeutics recently announced. Biogen acquired KPT-350 in a $10 million up-front payment agreement with Karyopharm, a deal worth up to $217 million in future milestones, plus royalties, to treat neurodegenerative diseases.
Recent studies point to a possible connection between ALS and chronic traumatic encephalopathy (CTE), the type of traumatic brain injury associated with playing football and other contact sports. NFL veterans Steve Gleason, Tim Shaw, O.J. Brigance, Dwight Clark, Kevin Turner, and others were diagnosed with ALS after their football careers ended. CTE has also been found in military veterans, who are twice as likely to be diagnosed with ALS.
New research published recently in the journal Nature Neuroscience provides a detailed analysis of TDP-43 aggregate composition and sheds important new insight on intracellular transport defects in ALS and other neurodegenerative diseases.
In 2017, many new research discoveries and collaborations accelerated the momentum toward finding treatments and a cure for ALS. We helped lead the way by awarding several new grants to top scientists and clinicians. We currently fund over 126 projects in eight countries, furthering the best ALS research in the world.
Dr. Steven Finkbeiner of the Gladstone Institutes recently announced a research partnership with Eli Lilly and Company to move his ALS research forward. Dr. Finkbeiner is a member of California-based Neuro Collaborative, an ALS Association-funded initiative focused on discovering new ALS therapeutics and moving them into clinical trials. This multi-year, milestone-driven project is using innovative robotic microscope technology to focus on better understanding neurodegenerative diseases, with a large focus on ALS.
People living with ALS eventually lose the ability to speak to their loved ones and friends. In partnership with Prize4Life, we initiated the ALS Assistive Technology Challenge to improve the lives of people with ALS.
ALS is a severely debilitating disease that takes away a person’s ability to move, speak, swallow, and eventually breath. There is much to be accomplished to immediately enhance their quality of life. With this in mind, we sponsored an ALS Hackathon in partnership with Prize4Life to bring together bright, young students to brainstorm and quickly develop an assistive technology prototype.
When first diagnosed with ALS, one of the first questions people ask is whether it is OK to continue exercising. A recently completed ALS Association funded study by Dr. Nicholas Maragakis of Johns Hopkins University and team set out to help answer this common question by exploring the possible benefits of exercise for people living with ALS.
Dr. Don Cleveland of University of California, San Diego received the 2018 Breakthrough Prize in Life Sciences, an eminent honor to our long-time-funded ALS researcher. He received a $3 million prize, the largest individual monetary prize in science, during “The Oscars of Science” gala in Silicon Valley hosted by Morgan Freeman and aired on the National Geographic channel.
This year’s annual Society for Neuroscience (SfN) Meeting in Washington, D.C., was a huge gathering of over 30,000 attendees from 80 countries all dedicated to advancing neuroscience. The ALS Association was one of 534 exhibitors and promoted our global TREAT ALS research program.
Dr. Pierre Drapeau and team of Université de Montréal recently published an important paper in JCI Insight showing how basic animal models are used to identify ALS potential therapeutics.
From donations raised through the ALS Ice Bucket Challenge, The ALS Association, in partnership with the Greater New York Chapter, made a $2.5 million commitment to the Center for Genomics of Neurodegenerative Disease (CGND) at the New York Genome Center (NYGC).
The Center for Genomics of Neurodegenerative Disease (CGND) at the New York Genome Center (NYGC) is a prominent player in ALS genetics, leading the way in ALS gene discovery. We are proud to report on its many successes in ALS genetics that were made possible by our major funding efforts.
Meet Dr. Veronique Belzil, an Assistant Professor in the Department of Neuroscience at Mayo Clinic College of Medicine in Jacksonville, Fla., and a former ALS Association Milton Safenowitz Postdoctoral Fellow. Having been personally touched by ALS, she is extremely dedicated to finding treatments and ultimately a cure for this devastating disease.
The clinical trial to test RNS60, a new compound for the treatment of ALS, which was supported in part from a $1.0 million grant through the ALS ACT initiative funded by The ALS Association and ALS Finding A Cure®, is now actively enrolling. This randomized placebo-controlled phase II study is being run by the IRCCS Mario Negri Institute for Pharmacological Research in Milan and the ALS Center of the Maggiore University Hospital in Novara Italy. We are happy to report that the first patient was dosed in mid-July 2017.
It’s been three years since the viral fundraising phenomenon known as the ALS Ice Bucket Challenge, which allowed us to dedicate millions of dollars to our global TREAT ALS™ research program.
Because research takes time, we are now starting to see results of our investments. This is a very exciting time in ALS research!
