An ALS diagnosis is difficult to process. People often feel shocked and isolated by the news, whether the diagnosis was for themselves or a family member. It’s hard to move forward or figure out what comes next. “For many people, …
Illinois proclaims ALS Awareness Month, recognizes Les Turner ALS Foundation
Gov. J.B. Pritzker has proclaimed May as ALS Awareness Month in the State of Illinois, recognizing the care and support that the Les Turner ALS Foundation provides for people living with ALS and their families. The full proclamation can be …
Introducing My ALS Decision Tool™ on Genetic Testing for People Living with ALS
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 …
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 …
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 …
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 …
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. …
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 …
