RESOURCES 

Useful web links in Spastic Diplegia–Bilateral Cerebral Palsy. It includes approximately one hundred useful online resources from the book.

Tommy’s book is about living with CP. Tommy wrote it towards the end of high school.

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. There are some great podcasts here and here. (I suggest you scroll down the page and listen to the podcasts in order.)

An excellent systematic review by Novak et al. (2020) of treatments for preventing and treating children with CP.

MyCP, part of the Cerebral Palsy Research Network (CPRN), is currently looking for adults with CP to participate in an online survey. My son, Tommy, has completed the survey–I would encourage others to do so also.

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.

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.

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.

Information on research and clinical trials collated by the Cerebral Palsy Foundation

Specifically for supporting/empowering families

ENVISAGE: 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.

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.

Books/Movies

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.

Rising phoenix is a 2020 documentary film which tells the stories of nine Paralympians, and is available on Netflix.

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