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 …
Faces of ALS: Devoted to Care
Jayanthy Thiagarajah was a fiercely independent woman and a devoted grandmother. In early 2021, having recently lost her husband, Jayanthy was still in mourning when she took a couple of nasty falls that required medical attention. She lived in Boston, …
Les Turner ALS Foundation Names Laura Freveletti as New Chief Executive Officer
The Les Turner ALS Foundation announced today that Laura Freveletti has been appointed Chief Executive Officer (CEO), effective April 10, 2023. Freveletti succeeds Andrea Pauls Backman, who will step down after eight years of service as CEO. “We are thrilled …
Call for Comments: Proposed Decision on Medicare & Seat Elevation Systems
UPDATE: As of May 16, 2023, Medicare will formally cover wheelchair seat elevating systems for many types of power wheelchairs. We applaud this decision and are proud to have advocated for it. These systems are vital for those living with a disability. …
March 2023 Foundation eNews
Foundation News FDA Advisory Committee meeting on tofersen, an SOD1-ALS treatment set for March 22 The U.S. Food and Drug Administration (FDA) will hold an advisory committee meeting on March 22 to review Biogen’s New Drug Application (NDA) for accelerated …
Comments to the FDA Advisory Committee in Support of Tofersen Approval
RE: FDA-2022-N-0691 Dear FDA Advisory Committee: We write to express our strong support for the approval of tofersen under the FDA’s Accelerated Approval Program. Our organization’s long history of scientific research into SOD1-ALS and our depth of experience supporting people …
