January 2017

Dear ,

Happy New Year from all of us at CP-NET! 

We are thrilled to be back with our biggest edition yet of CP-NET Today!   Continue reading to discover the latest CP-NET resources and announcements, watch our new video and catch up on CP-NET Science & Family Day presentations and celebrations. We also invite you to get to know a few of the many people who make up CP-NET through a community profile and recent publications by CP-NET members. 

The CP-NET Today! newsletter will help you keep up-to-date on exciting research developments in the area of Cerebral Palsy (CP) research funded by the  Ontario Brain Institute (OBI) , as well as news and events of interest to the CP-NET community. Please feel free to share this newsletter with family, friends and colleagues. They can subscribe to the CP-NET Today! e-Newsletter for free  by registering here . Don't forget to check the  cp-net.org  website for more great resources on CP.

CP-NET Science & Family Day

On October 5, 2016, our community came together to celebrate World CP Day with the 3rd Annual CP-NET Science & Family Day. Thanks to the  families, caregivers, clients, healthcare professionals and researchers who helped make this event a smashing success!

All presentations are now available online, including:

CP-NET Overview 
Darcy Fehlings, CP-NET Program Lead
What is it Like to Live with CP?
Paige Zaldin, CP-NET Stakeholder
Parenting Children with Neurodisabilities: Context & the Lived Experience 
Lucy Lach, Associate Professor at McGill University 
Reflections: Where Can We Go Next?
Peter Rosenbaum, CP-NET Executive Committee
The F-Words: A Framework for Supporting Family Wellbeing
Panel Session with Danijela Grahovac, Julia Hanes, Jonathan Lu and Maria Susini. Moderated by Andrea Cross.

Go Baby Go: Technology and Training that Lets a Kid be a Kid!
Cole Galloway, Director of the Pediatric Mobility Lab & Design Studio at the University of Delaware 
A Stakeholder Voice to Drive CP Research - Our CP Community has Spoken!
Darcy Fehlings, CP-NET Program Lead
Brenda Agnew, CP-NET Stakeholder  

  View now.

New Video!
Announcing the Release of "Discover CP-NET"!

" Discover CP-NET" was released on October 5, 2016 in celebration of World CP Day. 

Watch our new video to learn more about CP-NET and the amazing partners that make it all happen.  "Discover CP-NET" was created in collaboration with children, youth and adults with cerebral palsy and their families. 

New Resources!


Webinar: Pain Prevention and Treatment in Children & Young People with Cerebral Palsy

Presented by Darcy Fehlings & Shauna Kingsnorth on November 23, 2016

Pain in children and young people with CP is under-recognized and can have a serious impact on quality of life. This webinar discusses the importance of 'pain' and highlight research around the impact of pain on participation and quality of life. Common causes of pain and missed causes of pain are reviewed, and a framework for the assessment and treatment of chronic pain in CP is provided. Importantly, your role as a caregiver to 'open up the discussion' of pain management with your child's physician is discussed.


"The Six 'F-Words' for CP" Poster
A collaboration between CanChild & World CP Day .

"The Six 'F-Words' for CP" is based on the ground-breaking paper  (open access) by Peter Rosenbaum and Jan Willem Gorter, and focuses on the key areas of child development: 
  • Function
  • Family
  • Fitness
  • Friends
  • Fun
  • Future

The poster is also available in  Arabic , Chinese (Traditional) , Dutch , French , Indonesian , Portuguese , Serbian and Spanish

Please share with friends, family, colleagues and teachers! 

News & Announcements! 

Help us improve the CP-NET website!

The redesigned CP-NET website just turned one! Please share your feedback and suggestions by taking a short survey (1-3 minutes). This will help guide us as we continue to make improvements and develop new content.
Visit the CP-NET website evaluation survey (closes Feb 10)

Like us on Facebook!

CP-NET is now on Facebook! "Like" us to stay up to date on the latest CP-NET news and resources. 


CP-NET Scientists Featured in New Video Series 

CP-NET scientists are featured in a number of new videos produced by the Cerebral Palsy Foundation as part of their partnership with the ABC sitcom Speechless

Each video has had thousands of views on Facebook. Please share widely to help raise awareness of CP and CP-NET research!

Jan Willem Gorter discusses teens in transition. What do you do to encourage your child's independence? 

Darcy Fehlings explains how CP can affect the brain depending on the type and location of the brain injury

Peter Rosenbaum presents an overview of CP, including what we can do to help individuals with CP and their families. 

Darcy Fehlings  addresses one of the biggest CP myths of all. 

Jan Willem Gorter sums up the groundbreaking "F-words" paper in 30 seconds!

CP-NET Community Profile: Georgia  Beauchemin
Mohawk College Student & CP-NET Stakeholder Advisory Committee Member

At 21 years old, Georgia Beauchemin balances full-time studies at Mohawk College, friends, family and an active sports and volunteer schedule. She also has CP. Inspired by a course taken during the Recreational Therapy diploma program she completed earlier this year, Georgia is now pursuing a graduate certificate in Concurrent  Disorders. "I'm planning to make the most of my life!" she says.
Georgia recalls a time when her outlook on life wasn't as sunny. The road from adolescence to young adulthood is often bumpy, as young people explore who they are and how they fit into their world. Navigating this transition with a disability can add yet another layer of complexity. "As a young teenager, I was very angry about my disability", she recalls. "I felt it made me different from other people and I didn't want anyone to know about it. It got to the point where I would not wear my hearing aids to school because I was afraid of people noticing that I had them".

It wasn't until her final year of high school that she began to see the ways in which having CP had positively influenced her life. "I wouldn't say that I don't ever wish that I didn't have it, because it does make things harder sometimes. But it also makes me determined. I don't know who I would be without it." 


Get Involved in Research!

Most brain research for people with CP focuses on early brain development. More research is needed to understand how the brain changes through the teenage years and into adulthood. The MyStory Project will study physical health (fatigue and pain), mental health (anxiety and depression), chronic stress and overall well-being in adolescents and young adults with CP between the ages of 16-30.

View the flyer to find out how you can get involved. 

Recent Publications by CP-NET Members

Youth with disabilities often struggle to develop life skills, which are crucial to securing employment, daily living, developing and maintain friendships as well as many other tasks associated with emerging adulthood. This problem is exacerbated due to the lack of opportunities to explore the world and expand their social world as they grow. As such, life skills programs aim to enable youth with physical disabilities to develop the skills they need for emerging adulthood. The study investigated the perceived impact the residential immersive skills (RILS) program had on youth. By interviewing participants, it was identified that the program helped enhance higher-order skills, gave participants new notions of independence, and assisted youth in identifying change, empowerment, and advocacy. The structured and facilitative environment provided to the youth gave them many opportunities to learn and practice a variety of skills that led to an increase in competence and motivation to engage in independent activities. Additionally, through engaging with peers who had similar experiences, the youth were able to integrate their disabilities into their identity. Due to the positive effect the program had on participating youth, it is the hope of the investigators that the study will contribute to developing evidence-based best practices for similar life skills programs in the future.  

Authors: McPherson AC, Rudzik A, Kingsnorth S, King G, Gorter JW, Morrison A. Dev Neurorehabil.  2016 Mar 22:1-10.

In combination, the Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), and Communication Function Classification System (CFCS) are able to provide a functional profile of children with CP. As part of the On Track study, consensus classification of children using these three systems was performed in conjunction with seven parents and therapists of children with CP. The main goal of the study was to investigate the parents' experiences and perceptions of utility as they used the three systems to classify their child. Overall, the researchers uncovered seven themes through the process. The themes were reflective of an increasing degree of understanding of the classification as well as positive perceptions of utility. Parents also identified six recommendations for service providers to be mindful of while performing the classification.  These recommendations included acknowledging individual parent reactions, making the child a priority, using an individualized holistic approach, facilitating positive and open dialogue, fostering connections, and being a dependable resource. By providing such insight into the parent point of view and recommendations regarding this classification process, it is the hope that these considerations can be taken into account when used in clinical practice to facilitate collaboration for goal setting and intervention planning. 

Authors Scime NV Bartlett DJ Brunton L Palisano RJ Phys Occup Ther Pediatr.  2016 Jul 1:1-16. 

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Contact Us: if you have any questions or comments, please contact us at  cpnet@mcmaster.ca.

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Funding for CP-NET is provided by the Ontario Brain Institute and our partners.
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