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.
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.
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.
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.