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 …
Faces of ALS: My Story of Service
ALS is called a rare disease. But for reasons not yet known, veterans are twice as likely to be diagnosed with ALS compared to the general public. Last week, we as a nation honored our brave veterans for their sacrifice …
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 …
November 2020 Events eNews
Go All in for ALS this Friday Night A 3 day, 2 night stay at a charming cottage nestled in the Indiana Dunes could be yours! This magical getaway is just one of the silent auction prizes offered at our …
