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. Last year, more than 1,000 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.
In 2014 alone, the National ALS Advocacy Day:
- Hosted more than 500 meetings with members of Congress and their staffers to urge increased funding for ALS research and medical care.
- Affirmed that more than 200 members of Congress would support increased access to speech-generating devices for people with ALS.
- Increased the number of co-sponsors for the MODDERN Cures Act by 30%. This bill would speed up the development of improved treatments for people living with chronic diseases like ALS.
- Introduced the ALSA Expo, which allows ALS patients, caregivers, and supporters to speak directly with ALS researchers, learn more about innovative assistive technology, and connect with experts in military benefits, and financial planning.
- Urged Congress to appropriate $10 million in continued funding for the ALSRP, a Department of Defense study that analyzes veterans’ increased risk for developing ALS.
- Fought for an additional $10 million in funding to continue the Centers for Disease Control’s National ALS Registry.
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.