The 2018 LHHS Appropriations Bill has been approved and published. We are glad that this bill has the strongest language in support for Cerebral Palsy research and surveillance to date and are looking forward for the CP community being able to capitalize on the work that is already being done at the CDC and NIH.
We were able to get everything in the bill that we asked for except the 5 year strategic plan at the CDC. We will be following up this week to gain further feedback on understanding how we can better move forward with the CDC.
The language at the NIH is strong and can help the CP Community of researchers and patient advocacy groups work collaboratively to gain more grants for research opportunities. I would love for this group to talk about some priorities and a plan to move forward in working to pull through these opportunities at the NINDS / NICHD.
In CDC – pg. 69
Cerebral Palsy [CP].—The Committee encourages CDC to build upon existing surveillance and research applications of CP surveillance within the established 11 Autism and Developmental Disabilities Monitoring Network surveillance sites. The Committee recognizes and supports CDC’s efforts to include CP surveillance in three existing sites and encourage CDC to expand this effort within current resources to additional sites allowing for a more nationally representative sample.
In NINDS – pg. 91
Cerebral Palsy [CP].—The Committee commends NINDS for developing the CP 5-year Strategic Plan and urges NINDS to implement Funding Opportunity Announcements in support of the top priorities and increase its CP research efforts for prevention, treatment, and cure through the lifespan. The Committee encourages funding for basic and translational research (including regenerative medicine) for improved outcomes for patients with CP, and recommends collaboration with the research and advocacy community. Furthermore, the Committee recommends that NIH form a transNIH working group of program officers who manage their Institute’s CP portfolio and that this group regularly interact with CP patient advocacy groups.
More to come!!!