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October 2, 2008 

$5 Million ALS Research Bill Signed By President

The ALS Association achieved another victory in Washington, D.C. on Oct. 2  when President Bush signed into law the 2009 Department of Defense (DOD) Appropriations Bill. For the first time, Congress included $5 million in the bill to fund the ALS Research Program (ALSRP) at DOD.

The congressionally established program at the DOD is dedicated solely to ALS research, is the only ALS specific program at the DOD and is the only program focused on translational research with the goal of finding new treatments for ALS.

This is an especially significant victory not only because very few funding bills passed Congress year, but also because The Association and the ALS community overcame a significant amount of competition for scarce federal dollars.

The $5 million secured by The Association will be available to ALS researchers across the country. Moreover, the collaboration facilitated by the ALSRP and the additional dollars will provide the ALS community with greater opportunities to develop meaningful treatment.

While this is the first time Congress has provided funding for the ALSRP, the program actually was initially developed last year when The Association partnered with DOD to bring new focus to its ALS research portfolio, which The Association helped to start more than five year ago.

Dr. Lucie Bruijn, The Association’s senior vice president of research and development, and Ellyn Phillips, president of The Association’s Greater Philadelphia chapter and chair of The Association’s Board of Trustees Advocacy Committee, served on the ALSRP peer review committee. The program was modeled after The Association’s TREAT ALS (Translational Research Advancing Therapies for ALS) research initiative, a drug discovery program and clinical trials process created by The Association that accelerates discovery and testing of clinical candidates.

In addition, The Association worked with the DOD earlier this year to nominate ALS Association National Board Trustee Diane Winokur as a patient/family representative advising the ALSRP on the impact research proposals may have on patients and family.

The Association looks forward to continuing its strong partnership with DOD in 2009 to advance ALS research and a treatment.

This achievement is the result of the efforts of The Association’s national network of chapters, people with ALS, families and military veterans who have all reached out to Congress to tell the ALS story. This also demonstrates the effectiveness of The Association’s strategic outreach, which began when Bush released his budget last February and continued through The Association’s National ALS Advocacy Day and Public Policy Conference and the rest of the year.

For the third time in the past two weeks, The Association succeeded in accomplishing one of the organization’s priorities: funding for ALS research, which could not have been accomplished without the active involvement of the entire ALS community. Earlier, Congress passed the ALS Registry Act, and the Department of Veterans Affairs implemented historic new regulations for veterans with ALS.

Veterans with ALS have continued to play an important role in The Association’s advocacy efforts. Veterans with ALS are asked to join the Roll Call of veterans on The Association’s Web site at where they can learn how to help The Association continue to advance critical issues that will benefit them and the entire ALS community.

For more information, contact The Association at or 1-(877) 444-ALSA.




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