CP NOW’s Actions for Change Timeline
Fall 2011CP Daily Living established cpdailyliving.com, our blog and resource website.
November 2014Introducing the term ‘early developmental brain injury’
Opinion piece, “Introducing the term ‘early developmental brain injury’” is published in the medical journal Developmental Medicine and Child Neurology. As of December, 2017, this article has been cited 9 times in other publications. This article pushes professionals to reframe CP as infant brain injury/disturbance so that clinical care, research and government policy addresses the full range of symptoms and conditions associated with “cerebral palsy”.
November 2014CP Daily Living financially contributes to an analysis of historical federal funding for CP research.
This groundbreaking analysis brings a detailed understanding of what type of CP research the US government has funded and the money that has been spent in those areas. Dr. Yvonne Wu and colleagues summarize these findings in detail: “Cerebral Palsy research funding from the National Institutes of Health, 2001-2013”.
November 2014State of the Science and Treatment Decisions in Cerebral Palsy workshop
The workshop takes place at the National Institutes of Health, Rockville, Maryland. Dr. Scientists, CP organizations, NIH leadership and members of the public gather together to discuss the state of research and treatment options for CP. A strategic plan and a series of action items is developed to mobilize change for the CP community, including a proposal from the CDC for Michele, Shusterman, Parent and Founder of CP Daily Living, to organize the development of a CP diagnosis resource guide.
October 2015CP NOW is established as a nonprofit
CP NOW is established as a 501(c)3 nonprofit in the state of South Carolina, allowing us to raise funds to advance community projects and support people with CP and their families. CP Daily Living continues as part of CP NOW as a community resource hub and blog.
November 2015CP NOW releases The Cerebral Palsy Tool Kit
CP NOW formally opens to the public and simultaneously releases The Cerebral Palsy Tool Kit, from diagnosis to understanding, the first comprehensive CP diagnosis resource guide developed by parents and CP experts. This resource is offered electronically for free on the CP NOW home page and has been downloaded by people from over 65 countries!
Donate today and help CP NOW develop more critical resources like the Cerebral Palsy Tool Kit.
January 2016CP NOW creates diagnosis postcards
CP NOW creates diagnosis postcards introducing families to the CP Tool Kit. Clinicians may request these free postcards from CP NOW.
March 2016Michele Shusterman contributes to one of the most respected and beloved books about cerebral palsy
Michele Shusterman, Founder of CP NOW contributes to one of the most respected and beloved books about cerebral palsy, “Cerebral Palsy, A Complete Guide to Caregiving” by Dr. Freeman Miller and Dr. Steven Bachrach.
September 2016American Academy for Cerebral Palsy and Developmental Medicine’s “Making a Difference” Award
Michele Shusterman, Founder of CP NOW, receives the American Academy for Cerebral Palsy and Developmental Medicine’s “Making a Difference” Award for the development of The Cerebral Palsy Tool Kit. Watch Ms. Shusterman’s address to the professional audience during General Session, “From Chaos to Cohesion, Making Sense of CP for Caregivers”.
September 2016CP NOW partners with AACPDM to host the community education program
CP NOW partners with the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) to host the community education program during their 2016 annual meeting in Hollywood, Florida. CP NOW organizes the program and funds the video recording which are available on our YouTube channel.
September 2016Michele Shusterman co-teaches a course to a professional audience of physicians and therapists
Founder of CP NOW, Michele Shusterman co-teaches a course to a professional audience of physicians and therapists at the AACPDM annual meeting based on the development and distribution of a community survey about family perspectives on common CP therapies and interventions.
January 2017CP NOW receives the Eugene Washington PCORI Engagement award
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).
September 2017CP NOW releases the Spanish translation of the CP Tool Kit and the accompanying diagnosis postcards.
September 2017CP NOW releases a public resource that focuses on the wellbeing of parents/caregivers
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!
November 2017Parent representatives of CP NOW co-teach a course to a professional audience
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!
Help us reach the nearly 1 million with CP in the US and the clinicians involved with their care by making a donation today
June 2018CP NOW launches Research Program--First pilot study is funded!
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.
August 2018The "Research CP" white paper summarizing the CP community's research priorities, is published in Developmental Medicine and Child Neurology (DMCN)
Last summer, 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.
October 2018CP NOW hosts its first adaptive exercise program
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.
December 2018Founder and President of CP NOW authors chapter in groundbreaking CP handbook for clinicians
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
March 2019President of CP NOW participates in organizing an NIH workshop on exercise for wheelchair users
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.
Upcoming projects/commitments for 2019:
- CP NOW is currently fundraising to meet our $25,000 goal for our 2019 research program. This year CP NOW is working with the Cerebral Palsy Research Network to request and review applications aligned with the Research CP initiative that established a patient-centered list of research priorities for CP.
- President of CP NOW, Michele Shusterman, will speak from a parent’s advocates perspective about the experience of raising a child with CP and epilepsy at the Cerebral Palsy Research Network’s meeting for researchers in May of 2019.
- CP NOW will co-sponsor the AACDPM community education program for 2019 in Anaheim, California
- CP NOW’s next community resource guide is in progress–stay tuned for updates!
- The Portuguese translation of the CP Tool Kit is currently in production and due for release in late Spring/Early Summer of 2019.
- Michele Shusterman will be part of two symposiums (as a community advocate) at this year’s American Academy for Cerebral Palsy and Developmental Medicine’s meeting in Anaheim, California. One of the symposiums will be focused on vision impairment and visual ability in people with cerebral palsy and the other will focus on care pathways and clinical practice guidelines for child-hood onset disabilities.