Because we live in a changing environment, our survival and function depend on adapting to novel, potentially stressful, conditions. Is our ability to adapt to changing conditions fixed or is it possible to enhance our ability to tolerate a stressful …
Global Connections to Create a World Free of ALS
Andrea Pauls Backman, CEO, and member of the Board of Directors of the International Alliance of ALS/MND Associations Every December for the last 31 years, the ALS/MND community has gathered in various locations across the globe to share new findings …
ALS Disability Insurance Access Act Signed into Law
We are excited to announce that on Tuesday (December 22), the ALS Disability Insurance Access Act (H.R. 1407/S. 578) was signed into law, ending the five-month waiting period for people with ALS to access Social Security Disability Insurance benefits. The …
Caring for Our Caregivers
“Caregivers have insights to help others deal with the isolation, uncertainties, and fear during this pandemic because we face similar challenges in our caregiving roles,” says Jan Herwaldt of Sugar Grove. “I have heard it said, ‘we are all in …
Statement from Novartis Gene Therapies: OAV301 program for familial ALS caused by SOD1 mutation
Please see summary below from Novartis Gene Therapies on the OAV301 program for familial ALS caused by the SOD1 mutation: Novartis Gene Therapies (formerly AveXis) deeply appreciates the collaboration and support of the amyotrophic lateral sclerosis (ALS) community. Our ALS …
BrainStorm Announces Topline Results from NurOwn® Phase 3 ALS Study
Today was a tough call for the ALS community, but not entirely disheartening. BrainStorm released the topline results this morning (November 17) from its Phase 3 trial for NurOwn® showing it did not meet statistical significance in its primary efficacy …
Amylyx Publishes CENTAUR Survival Data Demonstrating Statistically Significant Survival Benefit of AMX0035 for People with ALS
We are excited to share some promising data regarding the CENTAUR trial evaluating AMX0035 in people with ALS on overall survival analysis, published today (October 16, 2020) in the neuromuscular disease journal Muscle & Nerve. The survival analysis followed each …
Advocacy Announcement: ALS Disability Insurance Access Act
Foundation Blog: Advocacy The Les Turner ALS Foundation has joined with several other national ALS patient advocacy organizations (ALS Association, I AM ALS, Muscular Dystrophy Association and Team Gleason) in a letter to U.S. House of Representatives’ leadership requesting that …
Data from Amylyx’s CENTAUR trial shows promise in slowing ALS progression
We are very pleased to share promising data published this week in the New England Journal of Medicine from the recent CENTAUR trial, conducted by Amylyx Pharmaceuticals, showing that AMX0035, the combination drug of sodium phenylbutyrate–taurursodiol, can slow functional decline …
Sustainers for Sustainability
These past several months have been unexpectedly difficult for everyone. For those facing the daily challenges of ALS, the many uncertainties and unanswered questions brought upon by the COVID-19 pandemic can be simply overwhelming. “Our commitment and number one goal …
