Congress Acts on MODDERN Cures and Therapy Caps

lesturner Advocacy

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

lesturner Advocacy

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

lesturner Advocacy

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 …