RESOURCES
The following are resources I collect here.
Websites
Useful web links are links to approximately one hundred useful online resources, included in Spastic Diplegia–Bilateral Cerebral Palsy. I haven’t repeated those resources here.
Tom Shakespeare’s website is a must read for anyone interested in disability matters.
CP-Achieve is a new Australian initiative which will, for the first time, address the health and social inequities of adolescents and young adults (10-30 years) with cerebral palsy (CP) – a growing population known to be significantly disadvantaged.
Cerebral Palsy Foundation’s CP Resource is a comprehensive information resource for CP across the lifespan.
Adult CP Hub is a UK organisation which creates a home for adults with Cerebral Palsy and put their needs at the forefront of the minds of the medical and research community.
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.
World Cerebral Palsy Day is a social movement and a day to celebrate the lives of the 17 million people living with CP. The project was launched in 2012 by Cerebral Palsy Alliance (Australia) and United Cerebral Palsy (USA). They publish some excellent posters.
Books/Movies
Being Heumann: The Unrepentant Memoir of a Disability Rights Activist by Judith Heumann with Kristen Joiner.
Disability Visibility: First-Person Stories from the Twenty-First Century, edited by Alice Wong.
About us: Essays from the Disability Series of the New York Times, edited and introduced by Peter Catapano and Rosemarie Garland-Thomson.
Demystifying Disability by Emily Laudau.
Improving Quality of Life for Individuals with Cerebral Palsy through Treatment of Gait Impairment by Tom Novacheck and Micahael Schwartz.
Rising phoenix is a 2020 documentary which tells the stories of nine Paralympians, and is available on Netflix.
Crip Camp is a 2020 documentary which tells the story of people who attended Camp Jened for disabled teens in New York, many of whom became grew up to become important activists in the U.S. disability rights movement, but also internationally.
Struggling with Serendipity was written by Cindy Kolbe about life following a car accident which left her 14 year old daughter Beth paralyzed. Beth later graduated from Harvard and represented the US at the Beijing Paralympics.
Miracles Happen: One Mother, One Daughter, One Journey was co-written by Brooke Ellison and her mom, and later adapted to movie, The Brooke Ellison Story, directed by Christopher Reeve.
FLY: Find Your Own Wings And Soar Above Life’s Challenges by Lex Gillette.
Unsinkable: From Russian Orphan to Paralympic Swimming World Champion by Jessica Long with Hannah Long.
Imperfect: An Improbable Life by Jim Abbott and Tim Brown.
Seize the Day: My Autobiography by Tanni Grey-Thompson.
Aim High (Quick Reads) by Tanni Grey-Thompson.
Breaking the Mould by Sinead Burke.
TJ and his Wheelable Chair and The Adventures of TJ and His Wheelable Chair by Amanda Kehoe.
CP Foundation recommended books (Great list.)
CP Research Network recommended books (Great list.)
Papers
Systematic review of interventions for preventing and treating children with CP by Novak et al. (2020).
Musculoskeletal Pathology in Cerebral Palsy: A Classification System and Reliability Study by Graham et al. (2021)
What Happens to Our Neuromuscular Patients in Adulthood: Pathway to Independence and Maximal Function by Koop and Shrader.
Billy Idol by Ethan Weiss. A beautiful aricle written by this cardiologist/scientist about his daughter Ruthie who has albinism.
Surveys
MyCP part of the Cerebral Palsy Research Network (CPRN), is currently looking for adults with CP to participate in an online survey.
Webinars, Podcasts, and more
A series of CP Research Network webinars on a variety of subjects relevant to CP.
Podcasts, TownHall Series, Facebook Live Events, Expert Videos, hosted by Cerebral Palsy Foundation.
Clinical Trials
Information on research and clinical trials collated by the Cerebral Palsy Foundation
Specifically for Supporting/Empowering families
ENVISAGE an acronym for “ENabling VISions And Growing Expectations”, is a series of online workshops developed in partnership by parents, clinicians and researchers across Canada and Australia. ENVISAGE aims to improve parents’ well-being and help them feel more competent, confident and empowered.
Healthy Mothers Healthy Families program is an Australian initiative to support, empower and encourage mothers of a child with a disability to learn about, and create a healthy lifestyle that fosters their own health and well-being, alongside a healthy, happy family life.
Early PACT: Early Parenting Acceptance and Commitment Therapy is an Australian programme.
Courses
CanChild–Family Engagement in Research Certificate of Completion Program is for researchers (graduate students, research coordinators, investigators, clinician-researchers etc) and families (parents, siblings, grandparents) who have an interest in child neurodevelopmental research.
Involving Families in Research
PenCRU is a UK childhood disability research team, that’s a partnership between researchers, families and health care professionals.
INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world.
Doing research inclusively: Guidelines for Co-Producing Research with People with Disability from the Disability Innovation Institute at UNSW Sydney.