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 …
Speech Generating Devices & Centers for Medicare and Medicaid
The Centers for Medicare and Medicaid Services (CMS) announced that they rescinded the “coverage reminder” that was issued last February that would have prohibited Medicare from covering SGDs that included functions such as email and internet access. While this is …
Annual ALS Surveillance Meeting – August 13 – 14, Atlanta, GA
Foundation representatives Wendy Abrams, Executive Director, and Shari Diamond, RN, Director of Patient Services, were invited to attend the Agency for Toxic Substances and Disease Registry (ATSDR) Annual Surveillance Meeting to hear the first report on the National ALS Registry …
Veterans Eligible for Specially Adaptive Housing (SAH) Grants
The Department of Veterans Affaris announced that veterans with ALS and those on active duty automatically are eligible for SAH Grants that provides veterans up to $68,000 to adapt their homes. This is a significant change to the SAH program …
