On September 15, Amylyx Pharmaceuticals announced its intention to submit a New Drug Application to the FDA for AMX0035 for the treatment of ALS. If the New Drug Application is successful, AMX0035 would be only the third drug approved by …
Les Turner ALS Foundation’s Andrea Pauls Backman Advocates for “Bold, Urgent Methods” to Improve Access to Potential ALS Treatments
In response to a recent congressional hearing focused on the slow pace of drug approvals for neurological diseases, Les Turner ALS Foundation’s CEO Andrea Pauls Backman spoke with Suz Redfearn, a reporter for FDA News. Andrea was quoted extensively in …
Neuromuscular Disease Community Calls for Passage of ACT for ALS (H.R. 3537)
On July 13, 2021 the Les Turner ALS Foundation and 19 other advocacy organizations sent a letter to call on the House of Representatives to pass the ACT for ALS Act (H.R.3537) as soon as possible, and no later than …
Finding Hope in ALS Research and Clinical Trials
By Lauren Webb, LCSW, Director of Support Services and Education Many years ago, as I was driving along Lake Shore Drive on my way to a pediatric hospital in Chicago, with the sun beginning to rise over Lake Michigan, I …
Tips for Preventing the Spread of Respiratory Disease
As someone living with ALS or in contact with someone living with ALS, you should always take special precautions to safeguard your health and the health of those around you. People living with ALS are at an increased risk of respiratory problems …
ALS Research Ambassadors Fostering Community, Influencing Change
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 …
Newly Discovered Compound Found to Reverse ALS Neuron Damage
We are pleased to announce more exciting news on the ALS research front coming out of our Les Turner ALS Center at Northwestern Medicine. On February 22, Northwestern scientists, led by P. Hande Ozdinler, PhD, and Richard B. Silverman, PhD, …
PEOPLE LIVING WITH ALS ELIGIBLE FOR COVID-19 VACCINATIONS STARTING FEBRUARY 25 UNDER ILLINOIS PHASE 1B; CHICAGO, COOK COUNTY EXCLUDED
We are pleased to announce big changes in access to COVID-19 vaccinations for people living with ALS in Illinois. The State is making plans to expand COVID-19 Phase 1B vaccination eligibility on February 25 to people who have comorbidities and …
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 …
Foundation Advocating for COVID-19 Vaccination Prioritization for Individuals with ALS
As we turn the calendar to 2021, the Les Turner ALS Foundation is taking proactive steps to help ensure that those living with neuromuscular disease, including ALS, are given priority access to COVID-19 vaccines and treatments. On Wednesday, January 6, Illinois …