Below you'll find a list of all posts that have been tagged as “Advocacy”
The Honorable Richard Hodes, MD, Director of the National Institute on Aging The Honorable Walter Koroshetz, MD, Director of the National Institute of Neurological Disorders and StrokeNational Institutes of Health 9000 Rockville Pike, Bethesda, Maryland 20892 Subject: ALLFTD Renewal Dear Dr. …
We are grateful to share that ALS has been recommended by House and Senate Defense Appropriations leadership for $40 Million for Fiscal Year 2025 through the Congressionally Directed Medical Research Programs at the Department of Defense. U.S. military veterans are …
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 …
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 …
“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 …
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. …
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 …
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 …
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 …
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 …
