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Activities

The CP Collaborative combines forces in various activities to increase the strength in numbers and speak with one voice for the CP community when it is critical to accomplishing a mutual goals. While the Collaborative is young, we have already worked together on several activities.

Advocacy

Date: June 2017

Goal: Support efforts to advance and build upon the language for cerebral palsy in the 2018 Senate Appropriations Bill.

Actions: Co-sign a letter of support to the committee members on the Senate Appropriations Committee.

2018 Appropriations Letter6.17

Results: Cerebral palsy language included in the 2018 Senate Appropriations Bill Report Language.

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.

 

Date: March 2016
Goal: Support the efforts of Reaching for the Stars to get report language for cerebral palsy into the 2017 Senate Appropriations language.
Actions: Co-sign a letter of support to the committee members on the Senate Appropriations Committee.
Collaborative_Letter_1_18_16
Results: Cerebral palsy language included in 2017 Senate Appropriations Bill Report Language.

p. 68 Cerebral Palsy.—The Committee encourages CDC to build on established
surveillance and research methods to develop a robust research
infrastructure focused on Cerebral Palsy across various geographic
U.S. regions.p. 86 Cerebral Palsy [CP].—Over 800,000 Americans are impacted by
CP 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, no national
CP registry, and few proven therapy protocols. The Committee
urges NIH to work with scientists and stakeholders to develop a 5-
year strategic plan for research on 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. The Committee
urges NIH participation in work groups to develop a research registry
of individuals with different forms of CP that could facilitate
research related to the impact of diverse impairments and health
issues on functioning, participation and well-being across the life
span.

Research

Goal: Support the efforts of CP NOW Foundation and the Cerebral Palsy Research Network to apply for conference support from the Patient-Centered Outcomes Research Institute to set a patient-centered research agenda for CP.
Actions: Several organizations, including AACPDM, APTA, CP Alliance Research Foundation, CP Foundation and Cure CP, wrote letters of support that were included in the application.
Result: Grant awarded and a conference was held in June 2017. A paper is currently in review with DMCN.