Last week, the Senate Appropriations Committee approved its version of the bill that would fund many key agencies, including the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), in FY 2013. Thanks to the hard work of PPMD advocates, the bill reflects a number of our priorities.
At the CDC, Senators strongly objected to the administration’s proposal to consolidate the many programs within the National Center on Birth Defects and Developmental Disabilities (NCBDDD), including the valuable Muscular Dystrophy program. PPMD, which has been a leading critic of the proposed consolidation, strongly supported both actions taken by the Senate.
In addition to these actions, the Senate provided nearly $5.83 million for the muscular dystrophy program at the CDC, the same level of funding provided in FY 12. This funding will be critical to helping discharge a number of key projects, notably an updating of the care considerations that have been instrumental in improving and extending life for patients with Duchenne.
At the NIH, the committee provided $30.7 billion, an increase of $100 million from the FY 12 level. The bill includes report language championed by PPMD that would continue supporting important Duchenne research programs, including one that seeks to accelerate development of potential therapies. It also includes language encouraging NIH to better coordinate the multiple Duchenne patient registry projects to be more efficient and prevent a waste of time or resources.
The House Appropriations Committee has not yet taken up its version of the legislation. Congress is expected to finalize the appropriations bills later this year.
These results prove the power of advocacy. Your voice IS being heard by those who represent you in Congress. You are advocating not only your family but families across the country.
PPMD will keep advocates apprised of all developments along the way.
Thank you for making a difference!