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Congress Takes Action on ALS Priorities

by | Jul 5, 2016

Thanks to nationwide advocacy efforts, Congress is taking action on several priorities for the ALS Community.

The Senate Appropriations Committee passed the fiscal year 2017 Health and Human Services spending bill and included $10 million to continue funding to the National ALS Registry. The National ALS Registry is a congressionally directed registry for people in the U.S. with ALS. It is a program to collect, manage, and analyze data about people with living with ALS, which helps doctors and scientists learn more as they work toward a cure. It is the only population-based registry in the U.S.

This additional funding will allow the Registry to continue funding ALS research, identify what causes the disease, and help to advance the search for a treatment. It will also enable the Center for Disease Control (CDC) to fully implement an ALS biorepository, which collects blood and tissue samples from those enrolled in the Registry. A biorepository will help accelerate the ability of this research project to meet the goals established by Congress and the needs of persons with ALS.

The Senate bill also included a $2 billion increase in funding for the National Institutes of Health (NIH) and a $100 million increase for the National Institute of Neurological Disorders and Stroke (NINDS).

Most importantly, the legislation included language providing direction to both the CDC and NIH on how the agencies should focus efforts on ALS research. This language helps to ensure that funding for ALS research is coordinated with other federal agencies and the broader ALS community. It is also strategically targeted so that this funding can make the most difference in the fight against ALS.

“Members hearing from constituents is the key way to advance ALS priorities in Congress,” said Mark Murtagh, Director of Community Affairs and Public Relations for ALS Texas. “When issues like these come up for a vote, Congressional members review what they have heard from advocates. ALS Advocates are crucial for encouraging Congress to increase funding for ALS research and care.”

The House of Representatives passed the fiscal year 2017 Defense Appropriations bill, which provided $7.5 million to continue funding for the ALS Research Program at the Department of Defense. If enacted into law, this would bring total funding for the ALS Research Program to nearly $70 million. The ALS Research Program funds innovative research that has identified four potential treatments of ALS to date.

The implementation of these various priorities stem from the efforts of ALS advocates who reached out to their Members of Congress to urge them to support these important priorities.

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