The History of Research Advocacy in Cerebral Palsy

Issue title: Cerebral Palsy

Guest editors: Deborah Gaebler-Spira, Michael Green and Heakyung Kim

Article type: Other

Authors: Frisina, Cynthia^{a; *} | Thornton, Lisa^b

Affiliations: [a] Cerebral Palsy Foundation, New York, NY, USA | [b] Assistant Professor of Clinical Pediatrics, Weill Cornell Medicine Qatar, Sidra Medicine

Correspondence: [*] Corresponding author: Cynthia Frisina, Cerebral Palsy Foundation, New York, NY, USA. E-mail: [email protected].

Abstract: Cerebral palsy (CP) is the most common motor disability of childhood, but US federal government investment into CP research has historically been under-prioritized and under-funded. This issue was brought to the forefront by the parent advocacy group Reaching for the Stars who partnered with the American Academy for Cerebral Palsy and Developmental Medicine to create a strong parent/professional partnership. This collaboration has resulted in increased awareness and federal commitment to cerebral palsy. This article highlights the important steps and lessons learned in the continuing journey of federal advocacy for CP research.

Keywords: Cerebral palsy, advocacy

DOI: 10.3233/PRM-220023

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 15, no. 1, pp. 229-235, 2022