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 …
Calming the destructive cells of ALS by two independent approaches
Scientists from the Les Turner ALS Center at Northwestern Medicine have discovered two ways to preserve diseased upper motor neurons that would normally be destroyed in ALS, based on a study in mice. Upper motor neurons initiate movement, and they …
2022 Impact Report
Your support of the Les Turner ALS Foundation is felt by people living with ALS, caregivers, families and loved ones everywhere. By making a donation or volunteering your time, you helped ensure they had the support they needed – and …
On the passing of Lin Brehmer, a true friend of the ALS community
Chicago radio host Lin Brehmer died today at the age of 68. He was widely known and beloved for his time on-air at WXRT-FM 93.1, but the ALS community in the Midwest knew another side of Lin: a friend, spokesperson …
Faces of ALS: Giving New Meaning to ‘an ALS Journey’ …Road Trip!
Erin Weis generously offered her story for our 2021 Annual Appeal, helping raise vital funds for ALS care and research — just one of the many ways she volunteered to support the Les Turner ALS Foundation. But her story was …
