As the appropriations process continues on Capitol Hill, we are thrilled to tell you that, thanks to your advocacy, Congress is taking action on several priorities for the ALS community!
Senate Bill Includes $10 Million for the National ALS Registry
The Senate Appropriations Committee passed its version of the FY 2017 Health and Human Services (HHS) spending bill and included $10 million to continue funding for the National ALS Registry. 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. The funding also will enable CDC to fully implement the ALS biorepository, which collects blood and tissue samples from those enrolled in the Registry, something that is so critical to advancing ALS research. Visit the CDC's website or view this fact sheet to learn more about the important work the Registry is doing.
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).
Importantly, the legislation included language providing direction to both 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 and is strategically targeted so that this critical funding can make the most difference in the fight against the disease.
House Passes Defense Bill that Includes $7.5 Million for the ALSRP
The House of Representatives passed the FY 2017 Defense Appropriations bill and 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 ALSRP to nearly $70 million. The ALSRP funds innovative translational research that has identified four potential treatments for ALS to date. An infographic that includes more information about the ALSRP is available here.
Thank you to every ALS advocate who reached out to their Members of Congress in support of these important priorities. You are making a difference!
Giving Tuesday was a great start on our year end goal. So far we have raised over $46,000. Our anonymous donor will match every donation dollar for dollar up to $175,000 until January 15, 2017. That's right, every donation you make will be doubled so you will receive twice as much satisfaction and double the number of people you will help with your wonderful and most appreciated generosity. This is 40% more than was matched last year so we are asking everyone to stretch your giving as well to make sure we use every nickel of this match. We can do it!
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors, CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.