The Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine is now an active site for Regimen F of the HEALEY ALS Platform Trial. The focus of Regimen F is ABBV-CLS-7262, an investigational product being developed …
Announcing the ALS Newly Diagnosed Support Series
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 proclama mayo el mes de concientización para ELA, reconoce Les Turner ALS Foundation
El gobernador J.B. Pritzker ha proclamado mayo como Mes de Concientización sobre la ELA en el estado de Illinois, destacando la atención y el apoyo que la Fundación Les Turner ALS brinda a las personas que viven con ELA y …
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, …
La FDA aprueba tofersen (Qalsody™) para el tratamiento de SOD1-ELA
Nos complace que la FDA haya otorgado la aprobación acelerada a tofersen para el tratamiento de SOD1-ELA. Como el primer tratamiento aprobado por la FDA que aborda una causa genética de la ELA, este es un momento histórico para la …
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. …
