Thursday, October 2, 2008

NOT ENOUGH DAMMIT

Congress Appropriates Additional $5 Million for ALS Research at DOD
Dear Drew,
We are excited to let you know that The ALS Association achieved another victory in Washington this week when the President signed into law the FY 2009 Department of Defense Appropriations bill. For the first time, Congress included $5 million in the bill to fund the ALS Research Program (ALSRP) at DOD! We now have a congressionally established program at the DOD that is dedicated solely to ALS research. It 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 even passed Congress this year, but also because we overcame a significant amount of competition for scarce federal dollars. The $5 million we secured 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 treatments. Funding Continues Critical Partnership with DODWhile this is the first time Congress has ever provided funding for the ALSRP, the program was initially developed last year when The Association partnered with DOD to bring new focus to their ALS research portfolio, which we originally helped to start more than five years ago. Dr. Lucie Bruijn, The Association's Sr. Vice President of Research and Development, and Ellyn Phillips, President of the Greater Philadelphia Chapter and Chair of the Association's Board of Trustees Advocacy Committee, served on the ALSRP peer review committee and the program itself was modeled after our TREAT ALS program. Additionally, we successfully worked with the DOD earlier this year to nominate ALS Association Trustee Diane Winokur as a patient/family representative advising the ALSRP on the impact research proposals may have on patients and families.We look forward to continuing our strong partnership with DOD in 2009 to advance ALS research and find a treatment. Thank You!This achievement is the result of the efforts of ALS Association Chapters, PALS, families and military veterans to reach out to Congress and tell the ALS story. It also demonstrates the effectiveness of our strategic outreach, which began when the President released his budget last February and continued through Advocacy Day and the rest of the year.
For the third time in the past two weeks, we have succeeded in accomplishing one of our top priorities. Passage of the ALS Registry Act, implementation of historic new regulations for veterans with ALS, and now funding for ALS research could not have been accomplished without the active involvement of the entire ALS community. THANK YOU!!
Join the Roll Call of Veterans!Veterans with ALS have continued to play an important role in our advocacy efforts. If you are a veteran or know a veteran with ALS, please join the Roll Call of Veterans on our website, here: http://alsa.capwiz.com/alsa/mlm/verify/. Learn how you can help us to continue to advance critical issues that will benefit veterans and the entire ALS community.
If you have any questions, please contact us at advocacy@alsa-national.org or 1-877-444-ALSA. Thank You!