ALS Disability Insurance Access Act Signed into Law We are excited to announce that on December 22, the ALS Disability Insurance Access Act was signed into law, which waives the mandatory five-month waiting period for ALS patients to receive Social …
Research May Lead to New Ways to Combat ALS
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 …
Faces of ALS: Passion, Unabated
For Diane Pospeshil and her family, music and the arts are a lifeline and part of their collective DNA. Beginning with a small dance studio they ran from the basement of their home in Buffalo Grove, Illinois, the family business …
December 2020 Events eNews
Les Turner Symposium on ALS Recordings Available In case you missed any of our virtual 10th Annual Les Turner Symposium on ALS last month, presentation recordings are now available! We welcomed leading ALS clinicians and researchers from across the country …
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 …
December 2020 Foundation eNews
Be a Giver this Giving Tuesday This holiday season, your tax-deductible gift provides life-changing help to a person living with ALS. There is no better time to kick off your end of year giving than today, Giving Tuesday – the …
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 …