Submitted by Mary Secco, Vice President North America

Anita Kaufmann Foundation of New Jersey continues to educate primary school aged children with their “Thinking about Epilepsy” classroom presentation. More than 25,000 American children have been educated by this program. The program uses role plays, props, videos and games to teach seizure recognition and seizure first aid. Most importantly, the program promotes tolerance and acceptance of people living with epilepsy. Anita Kaufmann Foundation has implemented the program in 5 US States and Israel. For more information go to www.akfus.org

Epilepsy Foundation has united with Greg Grunberg (star of HEROES, ALIAS and FELICITY) and other Hollywood celebrities and top health care experts to create the ‘Talk about It’ program. The program website www.talkaboutit.org hopes to end the misperceptions and misunderstanding about epilepsy and seizure disorders. The website reinforces the important value of simply talking about epilepsy. The program is empowering and promises if we all talk about epilepsy together we will end the stigma that hurts people living with this condition.

On a similar note, youth in Canada have created a website to give a voice to young people living with seizures. The website: www.endtrashtalk.com has been created by a 17 year old. Content on the site is provided by youth as young as 13 years of age. The goal of the site is to help youth from Canada and from around the world to share their personal story of what it is like to live with epilepsy. The site and its content are completely maintained and managed by youth. There are currently 16 personal stories and 4 rants on the website. Some kids have sent emails with their thoughts and others have sent in videos. All of the youth understand that they have a message that needs to be heard. Last week, the website designer was thrilled to hear that the website had reached a youth in Africa: “I am Moses from Kenya and I have epilepsy. Due to many misconceptions in our culture I could not share it with anybody. My friends run away from me so that for them not to catch the condition.”

There is hope and help for families coping with Lennox-Gastaut Syndrome (LGS). Epilepsy Foundation has a new program for LGS and highlights of this program can be found at www.LGSandmychild.org . This program provides information for parents to help them work with their medical team, to find treatment options and to learn seizure first aid. The program also reinforces the non medical implications of this syndrome and provides hope and help to deal with the school and at home. There is a parent support component and a section on planning for the future.

Brain Matters: an Introduction to Neuroscience is an interactive program to help senior science students to learn about the brain. The unit includes a comprehensive section on how the brain works and what happens during a seizure. The unit has a careers section and promotes epilepsy as a career choice for future health scientists. The program will be published by the Canadian Epilepsy Alliance in partnership with the Canadian League Against Epilepsy in 2009. The program contains a full colour teacher manual and 2 teaching DVD’s.

If you want access to materials in English, French or Spanish – the Canadian Epilepsy Alliance and the Epilepsy Foundation can help. For information about epilepsy programs, videos and resources in Canada please go to www.epilepsymatters.com For information about epilepsy programs, videos and resources in the United States go to www.epilepsyfoundation.org