The ALS Association

Ice Bucket Challenge Progress

Congressional Legislation Will Fund ALS Research Through 2013

March 25, 2013

On Thursday, March 21, Congress passed legislation which extends funding for two vital ALS research programs. The bill, which funds the federal government through the end of the current fiscal year, September 30, 2013, will provide $6 million to continue funding for the National ALS Registry. In addition, this legislation includes a nearly 20 percent increase in funding for the ALS Research Program (ALSRP) at the Department of Defense. ALSRP will receive $7.5 million this year, bringing total funding for the program to $40 million, all of which is explicitly focused on finding treatments for ALS. President Obama is expected to sign the legislation into law.

“We want to thank our ALS advocates for reaching out to their Congressional representatives, especially in the current economic climate when every program in the federal budget is under scrutiny for cuts or elimination,” said Steve Gibson, ALS Association Chief Public Policy Officer. “It is the tireless efforts of people with ALS and their families throughout the year that has allowed for this funding to continue.”

The Registry may become the single largest ALS research project ever created; it is designed to identify ALS cases across the U.S.   The Registry collects critical information about the disease that will improve care for people living with ALS and will help scientists, government entities that study the disease, and others in the ALS community to learn what causes the disease, how it can be treated and even prevented. The ALS Association led the fight to establish the Registry, working with Congress to enact the ALS Registry Act and secure federal funding to design, build and implement the National ALS Registry at the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR). Learn more about the Registry, visit our Website.

Congress established the ALSRP in Fiscal Year 2007 with a $5 million appropriation. The mission of ALSRP is to find new treatments for ALS.

Although the funding for the current fiscal year represents tremendous news in the fight to eradicate Lou Gehrig’s Disease, budget challenges remain. The sequestration could result in some cuts to all programs, including the Registry and the ALSRP. However, ALS advocates have the opportunity to avert cuts and possibly increase funding next year since the Fiscal Year 2014 appropriations process is currently underway. 

The ALS Association encourages everyone who would like to join the fight against ALS to become an ALS Advocate. ALS Advocates receive the latest news and updates about ALS public policy issues and also action alerts notifying them when their outreach to Congress can make the most difference.   People also can follow The Association’s Public Policy Twitter handle at @ALSPublicPolicy to stay informed about ALS issues on Capitol Hill.

Powered by Blackbaud
nonprofit software