Launching today, the new My ALS Decision Tool™ on Genetic Testing is the first tool of its kind in the U.S. that focuses on genetic testing for anyone with ALS. It is designed to help people learn more about treatment options, …
FDA Approves tofersen (Qalsody™) for Treatment of SOD1-ALS
We are pleased that the FDA has granted accelerated approval to tofersen for treatment of SOD1-ALS. As the first FDA-approved treatment to target a genetic cause of ALS, this is a landmark moment for the ALS community. We are grateful …
April 2023 Foundation eNews
Foundation News The first ALS Walk for Life team to register is… We are so excited to be back at Soldier Field for the ALS Walk for Life on Saturday, Sept 23! Congratulations to Hursh Power for being the first team to sign up …
April 2023 Foundation eNews
Foundation News Note from the CEO Next week, the Les Turner ALS Foundation will welcome its new CEO, Laura Freveletti. I’m thrilled for Laura and the Foundation and will work closely with her, our board, staff and our many partners to …
Note from the CEO
Next week, the Les Turner ALS Foundation will welcome its new CEO, Laura Freveletti. I’m thrilled for Laura and the Foundation and will work closely with her, our board, staff and our many partners to help orient her over the …
Faces of ALS: Living life to the fullest
Jessica Morris always knew there was a possibility that she might carry the SOD1-ALS gene and eventually get ALS, but she never dwelled on it, keeping busy with her three children – Aidan, Christopher and Mia. In 2020, she began …
FDA Advisory Committee Recommends Accelerated Approval of tofersen
Watch our oral testimony at the FDA Advisory Committee meeting on March 22, 2023. We are grateful to the FDA Advisory Committee for reviewing the evidence, listening to the ALS community and voting to recommend accelerated approval of tofersen for …
Oral Testimony to the FDA Advisory Committee on the Approval of tofersen
Delivered by Lauren Webb, LCSW, Chief Advocacy and Outreach Officer of the Les Turner ALS Foundation. See also remarks by Senda Ajroud-Driss, MD, Director of the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine. Open …
March 2023 Foundation eNews
Foundation News Tune in tomorrow: FDA meeting on tofersen The U.S. Food and Drug Administration (FDA) will hold an advisory committee meeting on Wednesday, March 22 to review Biogen’s New Drug Application for accelerated approval of tofersen, a treatment for …
Faces of ALS: Ina Turner Jones
“When I was told that Lester had ALS, I couldn’t even pronounce the word,” said Ina Turner Jones. “I don’t remember what I ate for lunch yesterday, but I remember the doctor’s speech verbatim.” Ina Turner Jones, widow of Les …
