ALS Ice Bucket Challenge Progress
Dear Colleague:
Studies funded by the Department of Defense, Department of Veterans Affairs, and National Institutes of Health have found that our heroes who have served in the military are approximately twice as likely to die from ALS (Lou Gehrig’s Disease or Amyotrophic Lateral Sclerosis) as those in the general population. Researchers don’t know why military veterans are at greater risk, nor is there an effective treatment available that could save or extend their lives. In fact, American veterans living with ALS today will succumb to this fatal neurodegenerative disease in an average of just two to five years following diagnosis.
We are writing today to ask for your help to find a treatment for this horrific disease by supporting continued funding for the ALS Research Program (ALSRP) at the DOD. The ALSRP is explicitly designed to find a treatment for ALS by promoting translational research, filling a gap in the drug development pipeline in which limited funding has prevented promising treatments from reaching patients.
This is a program request and funding is supporting the best science as awards are made on a competitive grant basis to researchers nationwide using a peer reviewed process. Importantly, the program is a collaborative effort that includes researchers from the DOD, VA, NIH and the private sector partnering together to avoid duplication and ensure that scarce resources are provided to the most promising projects across the country.
Congress has recognized the critical role the ALSRP plays in advancing the search for a treatment by appropriating funding for the program since FY 2007, including $7.5 million in FY 2016. However, the current funding level is 7% below the FY 2011 level and only is able to fund an average of six projects - over 90% will not receive funding. Opportunities to discover and deliver a treatment to veterans will be lost, leaving veterans with ALS – and all people living with the disease – no effective treatment option.
Funding for the ALSRP in FY 2018 is needed to take advantage of these opportunities and discover a treatment that can save or extend the lives of our veterans and those on active duty who each day risk their own lives in defense of this country.
Please join us in signing the attached letter to the Subcommittee on Defense. Help us fight for our heroes in the military just as they have fought for us. If you would like to sign the letter or have further questions, please contact Lindsay Manson in Rep. Reichert’s office or Maria Costigan in Rep. Courtney’s Office.
Sincerely,
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Dave Reichert, Member of Congress
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Joe Courtney, Member of Congress
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Seth Moulton, Member of Congress
Dear Chairman Frelinghuysen and Ranking Member Visclosky:
We are writing to thank you for your continued strong support of the ALS Research Program (ALSRP) within the Congressionally Directed Medical Research Programs. Your support is helping to advance the search for a treatment for ALS, better known as Lou Gehrig’s disease. We respectfully request that you support continued robust appropriations for the program in the Fiscal Year (FY) 2018 Department of Defense Appropriations Act.
As you know, ALS is a fatal neurodegenerative disease that destroys a person’s ability to control muscle movement. As the disease progresses, people become trapped inside a body they no longer can control, aware of the world around them, but powerless to do anything about it. The average life expectancy for a person with ALS is just two to five years after diagnosis. There is no effective treatment for the disease, no known cause and no cure.
We believe that it is important for the DOD to identify and research all diseases that may be related to service in the U.S. military, including ALS. According to numerous studies, including those funded by DOD, VA and NIH, military veterans are approximately twice as likely to die from ALS as those who have not served in the military.
The ALSRP is an innovative program designed to translate basic science into new treatments for ALS by funding innovative projects that fill the gaps in and compliment NIH funded research. In fact, the ALSRP is a model of collaboration as researchers from DOD, VA, NIH and the private sector partner together to avoid duplication and help provide strategic direction to the government’s fight against ALS. The program also supports the best science, funding research in the private sector on a peer-reviewed, competitive grant basis. To date, the ALSRP has generated four potential treatments for ALS and additional research is ongoing.
We are grateful that the Subcommittee strongly supported the ALSRP in FY 2016. However we are concerned that the current funding level is 7% below the FY 2011 level and only is able to fund an average of six projects - over 90% will not receive funding. By strongly funding the ALSRP in FY 2017, the Subcommittee can enable DOD to take advantage of vital research opportunities that move us closer to finding a treatment this horrific disease. Thank you for your consideration.
Sincerely,
