“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
The Les Turner ALS Foundation strongly supports Medicare coverage of power seat elevation systems and submitted public comments to the Centers for Medicare and Medicaid Services (CMS) in August 2022. We are pleased to share that CMS has released a …
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 …
Faces of ALS: Hope & Action in the ALS Community
“There is more hope and more action happening right now within the ALS community than I ever thought I would see in my lifetime,” says Deb Paust of Grayslake, Illinois. “It is empowering to be a part of that change.” …
January 2021 Events eNews
Become an ALS Research Ambassador Join our first-ever 2021 Chicago Virtual NEALS ALS Clinical Research Learning Institute (CRLI) online on February 20-21! The ALS CRLI is an annual two-day program dedicated to educating attendees on clinical research and therapy development …
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