Advocacy is an important part of the mission of the Les Turner ALS Foundation. It is also a crucial way to improve the quality of life for those affected by ALS. By uniting in a common cause, we can make a meaningful difference in the lives of those patients and families.
The Foundation participates in advocacy efforts at the local, state and national level. To receive regular updates about issues affecting people with ALS, we suggest signing up for legislative alerts through ALSA's public policy section or the advocacy section of MDA-ALS.
In addition, timely updates, particularly as they pertain to local issues, will be posted on this page. We also share advocacy news via our monthly e-newsletter. Please join our email list if you wish to receive our e-newsletter.
Past Legislative Issues
The following are just a few of the accomplishments that have resulted from past advocacy efforts:
- The Veterans Administration officially established ALS as a service connected disease, meaning that military veterans with ALS now have access to the highest level of VA benefits without having to prove that their disease was caused by their service in the military.
- The Social Security Administration included ALS on a list of conditions automatically qualified for expedited reviews, shortening review times to an average of just six to eight days.
- The Centers for Disease Control created a National ALS Registry, enabling better data collection so researchers can look for disease pattern changes over time and try to identify whether there are common risk factors among ALS patients.
- The Improving Access to Clinical Trials Act was passed, dictating that compensation of up to $2,000 for participating in clinical trials can't be considered income in Social Security Supplemental Income (SSI) and Medicaid determinations. This enables people with ALS to participate in trials without putting their eligibility at risk.
- For fiscal year 2011, Congress increased funding for the ALS Research Program (ALSRP) at the Department of Defense by $500,000--bringing the total appropriated to $8 million. The funding was included in the budget agreed to by Congress and the President and which was signed into law.
For more information on advocacy, please contact our main office at (847) 679-3311.
Pictured above: Marty Woywod (seated), Jim Woywod, and United States Senator Dick Durbin.