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 …

Les Turner ALS Foundation Takes Action

The Les Turner ALS Foundation participated with The National Organization for Rare Disorders (NORD) in a letter writing campaign to urge Congress to reconsider repealing the Orphan Drug Tax Credit proposed by Chairman Dave Camp (R-Michigan). Together over 130 patient organizations and professionals …

FDA Conducts first-ever public hearing related to ALS

In February 2013, the U.S. Food and Drug Administration (FDA) conducted its first-ever public hearing specific to ALS. Patients, caregivers, physicians and researchers addressed a panel of representatives from the FDA. The ALS Association and MDA partnered together to represent the ALS …