Parent and Family Networks
These are local networks of parents of children with seizure disorders, working together with Foundation staff and volunteers to lend a helping hand, a sympathetic ear, to other parents dealing with epilepsy in a child.
The network is currently active in 45 local Epilepsy Foundations and serves approximately 13,000 people a year.
Parent Support Groups
In addition to formal networks, parents helping parents are a key part of the Epilepsy Foundation's programs nationwide.
The design of the programs may vary slightly from location to location, depending on the preferences of the local community.
Some parent groups prefer a structured program of formal meetings, with outside speakers; others are designed to be informal get togethers for parents to meet others, share experiences and grow together. Whatever the design, the goal is the same: to help parents help their children with seizures and maintain a loving family environment for all its members.
Adult and Teenage Support Groups
These groups provide adults with epilepsy and teenagers with epilepsy a chance to meet others struggling with similar issues, to make friends, to gain from the experience of others. The groups take several forms, depending on local preference.
Some groups are structured with the primary goal of helping their members understand epilepsy better. Others offer an opportunity to discuss key issues. A third group may emphasize fellowship and giving people a chance to enjoy themselves in a setting where seizures are recognized, understood -- and accepted.
This website brings outreach and support to the Internet. Teens who want to make new friends and contact others living with seizures can check out our Teen Chat Group.
The majority of Epilepsy Foundations, recognizing that children living with seizures often feel isolated and different from their peers, offer summer camping experiences as well as year round support groups.
Some Epilepsy Foundations run the camps themselves; others make arrangements with local camps for a special camping session for children with seizures. In many cases, scholarship money is available through the local affiliate and also through the Epilepsy Foundation's national office for children with seizures to attend the camp of their choice.
In addition to summer camping and family retreat programs, some local Epilepsy Foundations sponsor children's programs year round, allowing kids to meet and make friends with others who face similar challenges.
J. Kiffin Penry Travel Assistance Program
When people with seizures need specialized care, it may not be available in the local area. Travel expenses for individuals and families may sometimes be a barrier to such care, especially when other medical expenses mount up. The Epilepsy Foundation offers a limited number of travel assistance grants, up to $1500 each, for people who must travel for specialized epilepsy care or testing.
While many people with epilepsy can get reliable control of seizures, children and adults with Lennox Gastaut Syndrome and other hard to control forms of childhood epilepsy have frequent and debilitating seizures.
For their families, each day brings challenges, uncertainty and stress along with the satisfaction of caring for a deeply loved child.
Yet even the most devoted of families need some time for themselves. Local Epilepsy Foundations who have secured special funding for this purpose then step in and provide expert care for an agreed upon period of time while the family regains its energy.
Visit your local Epilepsy Foundation to see if this program is offered.