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 …
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 …
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 …
Faces of ALS: Remembering Marshall Krolick – One of the Foundation’s Founding Members
When Marshall Krolick passed away in February, the Les Turner ALS Foundation lost one of its longest-standing family members and biggest supporters. As a close friend of Les Turner, for whom the Foundation is named, Marshall was at the hospital …
Faces of ALS: A New Addition to our Support Services Committee
For over 30 years, Cheryl Gallagher traveled the world as a flight attendant for United Airlines. From India to New Zealand, and Cambodia to Vietnam, she reveled in the opportunity to explore new places, take in fresh perspectives and immerse …
Tagging So Others Can Take a Breath
May is ALS Awareness Month. Every year, members of our Les Turner ALS family volunteer in our annual Tag Days Drive to spread the message of hope and help and raise funds to support people living with ALS and their …
Faces of ALS: Working to Make True on a Wish
When Jonathan Brent, MD, PhD, asks his ALS patients what their goals are, the answer is almost always the same: to find a cure for ALS. “What motivates me,” says Dr. Brent, “is how I can make true on that …
ALS Groups Urge Social Security Administration to Grant Immediate Access to SSDI Benefits
The Les Turner ALS Foundation has joined with 18 other ALS advocacy organizations, signing onto a letter strongly urging the Social Security Administration to honor the enactment for all those already in the waiting period. On December 22, 2020, the …
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