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.
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.