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Epilepsy Foundation Individual and Family Services

 

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.

Support groups are offered in many locations. We offer free virtual and in-person support groups for people living with epilepsy and their caregivers and loved ones.

Parents and Guardians

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.

Adults and Teens

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.

Bereavement

Bereavement support groups provide adults and young adults who have lost a loved one to epilepsy a chance to connect with others experiencing the same loss, to share their stories, to make friends, and to gain from the experience of others on their journey forward.

The groups are both virtual. The group for adults is open to individuals, ages 22+, who have lost a loved one to epilepsy. The group for young adults is open to individuals, ages 18-26, who have lost a sibling to epilepsy. If you’d like more information about these groups, please email sudep@efa.org.

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.

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.

Resources

Epilepsy Centers

Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.

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Epilepsy Medication

Find in-depth information on anti-seizure medications so you know what to ask your doctor.

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Epilepsy and Seizures 24/7 Helpline

Call our Epilepsy and Seizures 24/7 Helpline and talk with an epilepsy information specialist or submit a question online.

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Tools & Resources

Get information, tips, and more to help you manage your epilepsy.

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Find an Epilepsy Specialist

Ready for help? Find an Epilepsy specialist who can help guide you through your epilepsy journey.