NEWS ALERT – Federal Support of Cerebral Palsy Research!

US_Senate_Seal

NEWS ALERT – Here is information you’ve been waiting for about federal support of Cerebral Palsy Research! Per the Republican Clerk, Committee on Senate Appropriations, the language below has been included in the 2015 budget!

We have been privileged to work hard on behalf of the Cerebral Palsy community to include this historic Federal Appropriations language that actually states “Prevention, Treatment and Cure” of Cerebral Palsy, as well as “improving the opportunity for recovery of those already diagnosed.”

This is the first time a Cerebral Palsy 5 year strategic plan will be developed by the NIH/NINDS (National Institutes of Health/National Institute of Neurological Disorders and Stroke). This will lead to new research breakthroughs, improved standards of care and treatment etc. The Appropriations language also expands the current CDC research infrastructure (e.g. the current ADDM Network) to include expanded Cerebral Palsy surveillance and research.

Our belief in the possibility of prevention, treatment and cure of Cerebral Palsy is reaching a wider audience, and YOU have helped make that happen!

We will write more about this, but we wanted you to be the first to know that each of us speaking up actually does make a difference! We have Senator Jerry Moran (Kansas) and Senator Tom Harkin (Iowa) and their staffs to thank in particular for helping to make this happen. We’ll be writing a separate post about how we can express our appreciation and gratitude for the support of these lawmakers.

U.S. Senate Appropriations Language – 2015 Budget

IN NIH (NINDS):
Over 800,000 Americans are impacted by Cerebral Palsy and it is the number one motor disability in children. Currently, there are no identified best practices at diagnosis or through the life span, no organized standards of care, and no proven therapy protocols. The Committee urges NIH to work with scientists and stakeholders to develop a 5-year strategic plan for CP prevention, treatment, and cure through the lifespan with the goal of reducing the number of people impacted by CP overall, as well as improving the opportunity for recovery of those already diagnosed.

In CDC:
The Committee urges CDC to build on established surveillance and research methods in order to develop a robust research infrastructure focused on CP across various geographic U.S. regions. Infrastructure of this type holds promise for answering questions about the causes of CP and for identifying opportunities for prevention.