Every year, a group of ALS Texas staff members, ALS patients, caregivers, and supporters travel to Washington, D.C., to call on our elected officials as part of the National ALS Advocacy Day. In 2018, more than 500 people gathered at our nation’s capitol to put a human face on this devastating disease and encourage lawmakers to join the fight against ALS.
What Is Advocacy Day?
The National ALS Advocacy Day was created in 1998 so people living with this disease and their caregivers can tell their stories to the people who have the most capacity to improve their lives — their elected officials. Our Advocacy Day priorities range from increasing funding for ALS research to making sure ALS patients have access to essential medical care and services.
Advocacy Day also provides an opportunity for patients and caregivers to network with others who understand their stories, learn about cutting-edge government and ALS Association research programs, and ensure that their voices are heard.
The 2018 legislative asks included:
- Ensuring at least $10 million in appropriations for the ALS Registry at the Centers for Disease Control (CDC).
- Ensure at least $10 million in funding for the Department of Defense’s (DOD) ALS Research Program.
- Supporting increased funding for the National Institutes of Health (NIH) in FY2019, especially the National Institute of Neurological Disorders and Stroke (NINDS).
- Passing the ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
How You Can Get Involved
To participate in future National ALS Advocacy Days, sign up to be an ALS Advocate. We’ll send you email updates about how you can get involved in ALS advocacy opportunities in Texas and beyond.