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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: 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: To be determined.