December 2015

Dear ,

Welcome to the December edition of CP-NET Today! We are thrilled to share some of our latest updates, resources and opportunities in our last newsletter of the year... including some BIG news (you may have already noticed that things are looking a little different around here).

This has been an exciting year for CP-NET, with many new initiatives and advancements in research. We thank you for your continued support and interest, and look forward to all we can accomplish together in 2016! 

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.


Announcing the New CP-NET Website!

We are thrilled to announce that the CP-NET website has been completely redesigned! 

It is now easier than ever to access our content the moment you want it, wherever you are. The new CP-NET website is now fully responsive to any screen size - desktop, mobile or tablet! Additionally, our improved site architecture and search tool make it easier than ever to find what you are looking for. 

We are also proud to share that almost every image on our new site features families within the CP-NET community. Thank you to everyone who helped make browsing our new site a personal and welcoming experience!


CP-NET Science & Family Day

On October 7, our community came together to celebrate World CP Day with the 2nd Annual CP-NET Science & Family Day! Thanks to the families, caregivers, clients, healthcare professionals and researchers who helped make this event a smashing success!

View all the details on the new CP-NET website!




Watch the CP-NET Video!
Creating Possibilities for Cerebral Palsy

We are proud to announce the release of "Creating Possibilities for Cerebral Palsy", a new video produced for CP-NET in collaboration with children, youth and adults with CP and their families. 

The video was released on October 7th in celebration of World CP Day, and has since been shared in over 70 countries around the world. Thank you to all who worked so hard to raise awareness of CP and celebrate all that people with CP can do!





CP-NET Research News!

Historically, cerebral palsy (CP) has largely been attributed to an injury in the developing brain. While genetic risk factors have also been implicated, genetic testing is not routinely performed when assessing the cause of CP.

In a groundbreaking new paper published in Nature Communications, CP-NET investigators analyzed the genes of 115 children with CP and their parents and found that a clinically significant number of children (~10%) had large chromosomal abnormalities called copy number variants (CNVs), with 70% of these variants not shared with a parent. 

Prevention and cure have been identified as a research priority by parents and caretakers of children with CP. This study may provide a cornerstone for further study in the part genetic factors play in the development of CP.  

This study was carried out with support from NeuroDevNet.  
 

New Resources!
Science & Family Day Presentations Now Online!
Couldn't make it to Science & Family Day? All presentations are now available to view at your convenience online, including:
  • CP-NET Overview (Darcy Fehlings)
  • Engaging Through Social Media (Panel)
  • Genomics and CP (Richard Wintle)
  • Accessibility & Participation for Kids in the School System (David Lepofsky)
  • My Journey with Sports (Eric Flemming)
  • Fitness & Leisure for Teens & Young Adults with CP (Panel)
  • Growing Up with CP: Voices from the MyStory Project (Jan Willem Gorter)
View now. 
New Summary: CP-NET Clinical Constraint Therapy Study

This resource summarizes the results of a 2012 Constraint Camp. MRI pictures of the brain and Occupational Therapy tests results from before the camp are compared to results one month after, to determine what changes in the brain could predict improvements from constraint therapy.
New "In Brief": Designing Action-based Exergames for Children with Cerebral Palsy

Exergames are a promising way to allow children with CP to participate in physical activity, permitting adaptations of exercise equipment and video games. Fast-paced video games are particularly popular among children with CP and might be particularly effective at motivating physical activity since their fast pace gameplay encourages fast pace exercise. However, limitations in fine and gross motor function, eye-hand coordination and visual spatial reasoning associated with CP make it difficult for children with CP to play these games effectively. With the possibilities and challenges in action-based exergames, researchers tried to answer the question: Can action based exergames that are fun to play over the long term be designed for children with CP?
New Infographic: Exergames for Youth with Cerebral Palsy
(Click to view)
Developed by NeuroDevNet

The "Exergame" is a recumbent bike combined with fun and engaging computer games that are geared towards youth. The system is tailored to the needs of youth with cerebral palsy but can be enjoyed by anyone. 

Benefits of the Exergames include improved physical fitness and an opportunity to socialize through interacting with other players both on-screen and via the headset that is part of the gaming system. 

View now.


CP-NET Community Profile: Jess Silver

Like muscles, self-advocacy is a skill that needs to be flexed in order to grow stronger

To be a self advocate is to champion your own rights, to effectively communicate your needs and to make informed decisions about factors that may affect your health or life outcomes. The concept is frequently applied in relation to young people with disabilities, who often need to work harder than their peers without disabilities to ensure their needs are met in school, the workplace and daily life.
Jess Silver Flexes for Access

Growing up, Jess Silver never really thought of herself as different. "I just needed to do things differently," explains the Toronto resident, who experiences physical challenges associated with cerebral palsy and scoliosis that affect her ability to walk independently. "Most of my friends are able-bodied, and I never really thought of myself as an advocate for myself or for others."However, as she transitioned into adulthood and came up against more physical, social and systematic barriers, she found her personal relationship with self advocacy evolving. "(Now) I define it as learning everything I can about my condition," she says. "I define it as understanding my own beliefs and purposes, and embracing the fact that, yes, I do have a physical challenge, but I would never let that limit me."

Read more. 
 

Get Involved in Research!


CP-NET Research Database
The CP-NET Research Database project is collecting information to better understand how many kids are affected by cerebral palsy (CP) in different parts of Ontario and what causes CP with the goal of improving care and treatments.
Be FAST
(Brain change after Fun, Athletic Sports - Skill Training)

Participate in a research study looking at the relationship between changes in brain activity & changes in movement after walking-based training.

View the flyer.


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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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