Greetings from Toby's Foundation!

TOBY’S FOUNDATION Participates in Community Partnership Series "A Focus on Epilepsy Panel and Essay Reading" Sponsored by the Office of Service-Learning & Department of Dance at Chapman University, Orange, CA This was Toby’s Foundation’s first time at a meeting focusing on people affected by and living with epilepsy. Toby’s Foundation set up a booth for the meeting. The meeting allowed us the opportunity to share information about canine epilepsy and the work that we are doing to support the research to find the genes responsible for canine epilepsy and develop a screening test. We were also able to share about the similarities between the canine and human populations affected by epilepsy. The meeting consisted of campus and community representatives discussing epilepsy and its impact on individuals, families and the community. There was a presentation by children about their experience living with epilepsy and a video that a mother provided of her 4 year old daughter who has seizures. The challenges and heartbreak of having a child with seizures was evident and deeply moving. There was also some discussion about the stigma that is still associated with epilepsy. The Director of Programs and Services for the Epilepsy Alliance of Orange County provided an overview of epilepsy and information on the programs and services offered for adults and children with epilepsy. Epilepsy is a major health problem that still does not receive the attention that other diseases do. It was reported that epilepsy affects approximately 1 in 50 children and 1 in 100 adults.

What we found striking throughout the meeting were the similarities between human and canine epilepsy as to the types of seizures, the treatment options available, in particular, the medications used by both humans and canines with epilepsy and the depth and breadth of emotion and thought expressed by those who have the disease and those who love and care for them. Most people at the conference that we spoke with had little or no idea that dogs were affected by the disease and were further surprised that the seizures and medications were identical. As a caregiver of our beloved dog Toby who is affected with epilepsy I was able to share the struggles and challenges of living with and caring for an epileptic dog. The way in which this disease turns your life upside down was also very similar. This is a life altering disease for both humans and canines and their caregivers. I saw people with epilepsy and those who love and care for them going through many of the same things that we do. I found myself wishing that these two populations who are hurting and facing similar challenges because of epilepsy could reach out to each other. We are not alone in our fight against epilepsy. Maybe we can help one another to lighten the burden, to share the heartache and to bring comfort and healing by offering hope and help to each other. Find out if there is a local epilepsy group that you can help in some way. Perhaps a planned activity for children and teens with epilepsy who might enjoy meeting a therapy dog affected or unaffected by the disease and an epileptic dog. In helping others we so often help ourselves. Pam Douglas, J.D. President

AussiE-Update Volume III, No. 15
April 13, 2009