As proud partners of the National ALS Registry, Les Turner ALS Foundation Executive Director, Andrea Pauls Backman and Director of Patient Services, Judy Richman, attended the Annual Agency for Toxic Substances and Disease Registry (ATSDR) Meeting in Atlanta this week. …
Every August Until A Cure
In August 2014, a viral phenomenon took over social media feeds across the globe with people accepting the ALS Ice Bucket Challenge. Friends challenging friends, patients challenging celebrities and teenagers challenging grandparents to douse themselves with ice cold water while …
Racing for Awareness
Since Derek Hogg was diagnosed with ALS in 2013, he has become a staple at the Les Turner ALS Foundation’s Strike Out ALS 5k. Whether running, using his son’s stroller for support or peddling a special recumbent bike, Derek defines …
March of Faces Banner
Honor a loved one by including them on a March of Faces banner. The banners travel with the Foundation and are displayed at various events throughout the year as a way to recognize those we have lost to ALS despite …
Personalize Your Care Act
Take action and urge your Representative to support the Personalize Your Care Act (PYCA)! This act was introduced by Earl Blumenauer (D-OR) and Rep. Phil Roe (R-TN) in the US House of Representatives to increase accessibility to and public awareness …
Senate votes to pass amendment to the National Defense Authorization Act
The Les Turner ALS Foundation is pleased to announce that, this week, the Senate voted to pass Senator Dick Durbin’s (D-IL) amendment to the National Defense Authorization Act to protect crucial medical research programs for ALS funded by the Department …
Legislation Introduced to Waive Five Month SSDI Waiting Period For People Living With ALS
Take Action to urge your Members of Congress to co-sponsor the “ALS Disability Insurance Access Act” and support people living with ALS by getting them the benefits they need faster. The Act, which was introduced by Senators Sheldon Whitehouse (D-RI) and …
Adjacent Government: Helping ALS patients is not only a medical need, but also a moral obligation
An article by Dr. Hande Ozdinler was published in Adjacent Government which provides a unique look at the complexities of ALS as well as the limitations researchers face as they search for a cure. Having funds for research is crucial …
Access To Complex Rehab Technology is Threatened for People with Disabilities
The Illinois Medicaid program recently announced significant payment changes to Complex Rehab Technology(CRT). The cost of supplying this specialized equipment will no longer be covered and as a result, CRT companies have been forced to suspend services for Medicaid beneficiaries …
ALS Drug Development Guidance Available for Comment
Make Your Voice Heard We are happy to announce that the first draft of the community-driven FDA Guidance on ALS drug development is available for your review and comment. In our April e-newsletter, we shared the exciting news that the …
