The Hollywood Reporter recently published a great article about new discoveries toward a cure for ALS, thanks to contributions and support from Nanci Ryder, veteran talent publicist, and her friends and supporters. Nanci has bravely fought ALS since 2014 and has enlisted the support of such stars as Courteney Cox, Don Diamont, and Renee Zellweger.
Researchers funded through The ALS Association's Lawrence and Isabel Barnett Drug Development Program uncovered a new way to prevent muscle paralysis in an ALS mouse model. Dr. Steven Burden at New York University Medical School and colleagues at Columbia University Medical School used a stimulatory antibody to increase the activity of MuSK, a protein critical for maintaining the connections between muscle and motor neurons.
UPDATE: As of March 14, 2019, enrollment for the CENTAUR Phase II clinical trial has been completed. At the recent Leadership Conference for The ALS Association, Joshua Cohen and Justin Klee, CEO and president, respectively, and founders of Amylyx Pharmaceuticals, updated us on their ongoing CENTAUR phase II clinical trial. The Association is supporting their trial through ALS Ice Bucket Challenge donations, with a $2.96 million grant in partnership with ALS Finding a Cure.
For this Throwback Thursday, we’re taking it back to February 10, 2017. The article was titled, “Nuedexta Trial Demonstrates Promising Results Impacting Bulbar Function in ALS Patients.”
Research funded by The ALS Association using Ice Bucket Challenge donations recently led to a significant discovery in understanding a disease pathway behind the most frequent cause of inherited ALS and frontotemporal dementia (FTD).
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.
The Steve Gleason Enduring Voices Act (S. 1132 and H.R. 2465), which would permanently fix the current Centers for Medicare and Medicaid Services (CMS) policy limiting access to Speech Generating Devices (SGD) for people with degenerative diseases, was included in the government funding package approved by the U.S. House of Representatives last night.
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.
In the summer of 2014, the ALS Ice Bucket Challenge inspired 17 million people to upload videos and raised $115 million for The ALS Association. Since then, The ALS Association has committed more than $94 million toward its mission, including over $82 million to fund research, and helped forge nine new global research collaborations.
A new educational resource from The ALS Association, Including the Multidisciplinary Team Approach in Your Care, is now available. The guide provides an overview of the multidisciplinary team approach to care, describes a typical clinic visit, and discusses additional options for care and support from providers outside of the core care team.
Andrew Rea, a New York-based chef, filmmaker, and host of the hugely popular YouTube cooking show “Binging with Babish,” was hit hard when his friend, Garmt van Soest, messaged him to say goodbye during his final days. On October 23, Garmt passed away from complications from ALS.
On December 13-14, 2017, 52 people gathered in Charlotte, N.C., to discuss how to increase awareness and participation in the National ALS Registry, the only population-based registry in the country collecting information to help scientists learn more about who gets ALS and its causes. Researchers use the Registry in their studies to find possible treatments and a cure.
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 January 2014, Terry Fiset, a retired attorney turned theater director, was having trouble speaking and wanted help. She met Andrea Caban, a voice, speech, and accent specialist and the head of Voice and Speech in the Department of Theatre Arts at California State University, Long Beach (CSULB).
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.