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 …
International Alliance of ALS/MND Associations Update
The International Alliance of ALS/MND Associations has recently revised the guideline on the fundamental rights of people living with ALS/MND. These rights for people living with ALS/MND have been created to represent ideal conditions for those living with the disease …
Be an Advocate this May
May is national ALS Awareness Month and you can be an ALS Awareness Advocate! Each of us has been affected by ALS in different ways, but we are all advocates for finding treatments and a cure. Together, we can increase …
Steve Gleason Act
The Steve Gleason Act was signed by President Obama on April 22, 2015 and will preserve access to speech generating devices (SGDs) and eye tracking technology for people with ALS. The bill will also allow people with ALS to keep …
Congress Acts on MODDERN Cures and Therapy Caps
Congress took action on two important ALS priorities enacting provisions of the MODDERN Cures Act and extending the exceptions process that enables people with ALS to continue to access needed therapy services. While this is an important victory, much more …
