By Gwen Gotsch I lost my 30-year-old son to ALS in July of 2017. Kris was 27 and newly married when he was diagnosed. He died just three years later. During those three years, Kris, an elementary school special ed …
March 2021 Foundation eNews
Newly Discovered Compound Found to Reverse ALS Neuron Damage “We have identified the first compound that improves the health of upper motor neurons that become diseased,” shares Hande Ozdinler, PhD, senior author of the study along with Richard B. Silverman, …
Faces of ALS: Working to Make True on a Wish
When Jonathan Brent, MD, PhD, asks his ALS patients what their goals are, the answer is almost always the same: to find a cure for ALS. “What motivates me,” says Dr. Brent, “is how I can make true on that …
February 2021 Events eNews
Hoops & Hope Time to dress in your favorite team’s jersey because the NCAA Bracket Challenge for Charity hosted by the Young ProfessionALS Group is back! The Bracket Challenge is an exciting few weeks about having fun, competing against one …
February 2021 Foundation eNews
Therapeutic Potential for New ALS Drug According to a recent study published in JAMA Neurology, ezogabine, an experimental drug, is found to have potential therapeutic possibilities for ALS treatment. “Most importantly, ezogabine decreased cortical and spinal motor neuron excitability in …
ALS Groups Urge Social Security Administration to Grant Immediate Access to SSDI Benefits
The Les Turner ALS Foundation has joined with 18 other ALS advocacy organizations, signing onto a letter strongly urging the Social Security Administration to honor the enactment for all those already in the waiting period. On December 22, 2020, the …
Faces of ALS: Hope & Action in the ALS Community
“There is more hope and more action happening right now within the ALS community than I ever thought I would see in my lifetime,” says Deb Paust of Grayslake, Illinois. “It is empowering to be a part of that change.” …
January 2021 Events eNews
Become an ALS Research Ambassador Join our first-ever 2021 Chicago Virtual NEALS ALS Clinical Research Learning Institute (CRLI) online on February 20-21! The ALS CRLI is an annual two-day program dedicated to educating attendees on clinical research and therapy development …
January 2021 Foundation eNews
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 …
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 …