CP NOW receives the Eugene Washington PCORI Engagement award of $49,665 to conduct “Research CP”, a ground breaking CP community effort involving clinicians, parents, adults with CP and caregivers, working to formally develop a patient-centered research agenda for the CP community. This program is held in partnership with The Cerebral Palsy Research Network (CPRN).
This resource is created in partnership with Dr. Elise Davis and her colleagues at the University of Melbourne and is based on a resource she created in partnership with families in Australia. The wellbeing guide covers a topic often overlooked when it comes to the care of children with disabilities—the wellbeing of their parents and caregivers. This is a free resource available electronically through the CP NOW website. Printed copies are distributed to hospitals and clinics upon request (as our resources allow).
Please donate today and help us distribute our wellbeing resource to parents throughout the US!
Parent representatives of CP NOW co-teach a course to a professional audience at the American Pediatric Physical Therapy Association Conference in Cincinnati, Ohio. The course, “Twenty Years of Translating the GMFCS System into Practice”, emerged from a partnership of two parent advocates and three physical therapy researchers who surveyed the parents of children with CP to determine their current knowledge and desire for information about their child’s gross motor function. Most parents want to know more than therapists and other clinicians think they do!
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CP NOW awards funds to an international team of CP researchers including Dr. Gordon of Columbia University, Dr. Friel of the Burke Medical Research Institute at Cornell and Dr. Bleyenheuft of Université Catholique de Louvain in Belgium. This group is working to determine the key ingredients necessary to create and sustain motor changes in individuals with CP. This particular study investigates an intensive upper and lower body therapy called HABIT-ILE that is incorporated into an activity/camp based setting. This approach is already being used for individuals with hemiplegia (where CP affects one side of the body). We are hoping the outcomes allow these researchers to move on to securing funding for a much larger study.
In 2017, CP NOW and the Cerebral Palsy Research Network (CPRN) hosted Research CP, a comprehensive program that led to a prioritized list of research topics for the CP community that are meaningful to individuals with CP. This list and other details are summarized in the white paper, “Setting a patient-centered research agenda for cerebral palsy: a participatory action research initiative.” You can read more about this program here. Link to the open access paper.
CP NOW co-sponsors a local adaptive swim clinic for people of all ages in partnership with OPAF and the First Clinics. World Champion Triathlete Mabio Costa, a below knee amputee and athlete was the program instructor. Part of the mission of CP NOW is to support wellness initiatives like these that improve the quality of life of people with CP. We want to bring these opportunities to other cities throughout the US so that individuals with CP may learn about and experience new activities.
Michele Shusterman, Founder and President of CP NOW coordinates and co-authors a chapter about family life in a handbook for clinicians called, “Children and Youth with Complex Cerebral Palsy. This new resource brings together contributions from leading international CP experts to offer a practical resource for anyone working with families who have a child with complex CP, including the families themselves. Copies may be ordered from MacKeith Press
Michele Shusterman, President of CP NOW attends a planning meeting at NIH as a CP community representative and parent advocate. This meeting brings together an elite group of international experts in exercise research who organize a workshop about exercise for wheelchair users. The goal of this workshop is to generate a formal knowledge summary of what is understood about this subject as well as to advance research, legislative initiatives and to develop activity standards.
CP Daily Living established cpdailyliving.com, a blog and resource website, for parents, caregivers and others looking for information on and/or about CP.
The development of the website would later prove to be the foundation for CP NOW.