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Advocacy Update

Posted by Jennifer Lyman on
 March 29, 2019
  ·  61 Comments

Reaching for the Stars and Cerebral Palsy Foundation representatives met with key players on Capital Hill on March 25, 2019, National Cerebral Palsy Awareness Day, to discuss recommendations to the 2020 Senate Appropriations Bill Language regarding Cerebral Palsy research and surveillance at the NIH and CDC. We are all enthusiastic about the relationships that RFTS has cultivated over the years and the CP Collaborative membership is honored to be able to provide our support to this effort. This year, the CP Collaborative signed on to the language recommendations below:

2020 LHHS Appropriations Bill Report Language Recommendation:

In National Center on Birth Defects, Developmental Disabilities, Disability and Health:

Cerebral Palsy (CP) –Cerebral Palsy is the most common, lifelong motor disability caused by an early developmental brain injury. The mechanism of injury underlying CP is still not well understood, therefore the Committee encourages NCBDDD to use existing resources, networks, data sets and systems in infant health to improve CP surveillance and develop better understanding of the mechanisms leading to earlier diagnosis and better outcomes. While the Hammersmith Infant Neurological Exam (HINE) for early detection of cerebral palsy hasbeen developed and is being utilized by the CDC in other countries in response to the Zika virus, the standardized tools used for early detection are not being widely utilized in the US, and few providers are using these as standard of care. The Committee requests that CDC share early detection guidelines with pediatric providers and develop a US implementation plan. The Committee requests in the fiscal year 2021 CJ report on the cause, earlier diagnosis and treatment of CP across the lifespan.

In National Institute of Neurological Disorders and Stroke (NINDS):

Cerebral Palsy (CP) – The Committee commends NIH (NINDS) for implementing Funding Opportunity Announcements (FOAs) for clinical research supporting observational studies that are well suited for the study of Cerebral Palsy (CP). The Committee strongly encourages NIH to prioritize and implement additional FOA’s to significantly strengthen, accelerate, and coordinate cerebral palsy research priorities across the lifespan identified in the five-year CP Strategic Plan.  FOAs should target basic and translational discoveries, including genetics, regenerative medicine and mechanisms of neuroplasticity, as well asclinical studies aimed at early intervention, comparative effectiveness and functional outcomes in adults. The Committee also encourages, in conjunction with key stakeholders, that a follow-up workshop be held to further refine the specific opportunities that were identified in the NIH strategic planwith the objective of establishing CP-specific funding opportunities to address identified gaps. NICHD is also encouraged to coordinate with other agencies, including CDC, to support additional research on preventing, diagnosing and treating Cerebral Palsy.

2020 Appropriations Letter_Final 3.25

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What is the CP Collaborative?

The CP Collaborative is a diverse and volunteer network of existing cerebral palsy related organizations who represent: individuals with CP, their families, caregivers, researchers, physicians and therapists.

Mission

The Cerebral Palsy Collaborative provides a unified voice of cerebral palsy related organizations to strategically affect mutually agreed upon research, education, awareness, support and public policy initiatives for the benefit of individuals with cerebral palsy across the lifespan.

Contact Us

Collaborative Founder: Jennifer Lyman