Issue 1 / February 2014
Happy New Year!Letter from the Executive Director
Welcome to the first edition of the new and improved Spikes & Waves. We’ll continue to share stories about people with epilepsy, link you to the latest in epilepsy news from across Canada and around the world, and keep you updated about Epilepsy Support Centre programs and events. We’re now publishing the newsletter six times a year and sending it right to your email inbox!
It’s an exciting time here at Epilepsy Support Centre as we launch Game On, a new physical activity program for children with neurological conditions. You can read all about the program and the importance of physical literacy in the article below.
We’re also preparing for a busy year ahead. Purple Day for Epilepsy is fast approaching and our Annual Gala will follow soon after. We hope you’ll consider how you can get involved supporting those living with epilepsy in your community. Do you want to plan a Purple Day for Epilepsy event? Check out our list of suggested Purple Day activities. You can also show your support by attending our Annual Gala, making a donation, or volunteering. There are so many ways to participate!
Donna Pammer
Executive Director
Blake & VeronicaLiving with Epilepsy
When Veronica first found out her son Blake had epilepsy, she didn’t know anything about the condition: “I grew up afraid of seizures because no one talked about it unless they had some horror story to tell. My biggest fear was that others would look at my child the way I used to look at those who struggled with this unkind disorder.” Blake was scared that his friends would make fun of him. The entire family was afraid of the unknown.
Everything changed once they met with an Epilepsy Support Centre Public Educator. She provided information, advice, and, most important, hope. Veronica recalls, “I think just knowing that there was always someone I could call or email when I needed someone to talk to was the biggest help for us as a family!”
Blake took the courageous step of inviting the Public Educator to his class. She taught everyone about epilepsy and helped Blake tell his classmates about his seizures. Veronica is a proud mom, “As Blake stood there in front of his class I couldn’t help but feel so incredibly proud of him. He’s gone through so much and he is so brave. He decided that epilepsy wouldn’t define who he is and who he wants to become. He’s an amazing kid.”
Game OnPhysical Literacy and Your Child
Although it may look like it’s just fun and games, much of children’s play prepares them for life-long activity. Hop scotch and tag help children develop the skills to jump and stop or pivot while moving, which are useful in more sophisticated games like basketball and hockey. These initial skills are called physical literacy skills. Without them, many children withdraw from physical activity and sports, spending their leisure time in sedentary and unhealthy activities instead.
Due to misinformation, stigma, and social exclusion, children with neurological conditions such as epilepsy are often excluded from games that would help them develop basic physical literacy skills. They end up at a disadvantage and less likely to participate in ongoing physical activity.
All children have the right to be included and deserve the opportunity to feel like they belong. If your child has been excluded from playing games, it’s not too late.
GAME ON is our new, professionally developed program that helps children with neurological conditions develop these physical literacy skills in an inclusive environment and builds the foundation for a more active and healthier life. A trained professional customizes the program to fit each child’s abilities.
For more information or to register your child for Game On, email gameon@epilepsysupport.ca, call (519) 433-4073, or visit www.epilepsysupport.ca/gameon.
For information about volunteering as a Game On Counsellor, visit www.epilepsysupport.ca/other/gameonvolunteers.
Purple Day 2014March 26 is a Global Day for Epilepsy Awareness
Nine-year-old Nova Scotian Cassidy Megan created Purple Day for Epilepsy in 2008 to raise epilepsy awareness and dispel myths about seizure disorders. Purple Day for Epilepsy is now celebrated in dozens of countries around the world. In Canada, Epilepsy Awareness Month is celebrated in March, with Purple Day for Epilepsy on March 26 as the highlight.
The best way to celebrate Purple Day for Epilepsy is to honour its grass roots origins and organize events in your community. Whether it’s organizing a major fundraising event or simply telling people how epilepsy has touched your life, your efforts will raise awareness about epilepsy.
FUNDRAISING IDEAS
- Hold a Walk-a-thon, Read-a-thon, Dance-a-thon, or a Bunny Hop
- Organize a Purple Dress Down Day at your office, school, or local business. Everyone makes a donation to participate.
- Collect pledges to dye your hair purple.
Visit our Purple Day for Epilepsy page for more ideas about celebrating this international day of epilepsy awareness. www.epilepsysupport.ca/purpleday2014
