After my epilepsy was diagnosed when I was a young adult, my mom bugged me for about a year to join an epilepsy support group. I finally agreed to go once so that she would leave me alone. I contacted the Epilepsy Foundation of New Jersey (EFNJ) and was told that they were trying to get a group started in my area. The Epilepsy Foundation wanted to play a role in starting the group but they were looking for someone to become the group leader.

I went to my first meeting and felt that I was finally in a room of people who understood the experience of having epilepsy. These people knew my frustrations. I knew that I would feel better about my epilepsy by coming to this group and talking with other people. I told the Epilepsy Foundation that I would accept the responsibility of being the group leader.

I also agreed to be listed as a contact person with EFNJ. Anyone who wanted to speak to someone with epilepsy was given my name and number. I was able to help many people with newly diagnosed epilepsy, both through our telephone conversation and by sending them a packet of information about epilepsy. Many of these people ended up attending the support group.

The group met the third Thursday of every month at a room in the local hospital. At each meeting, everyone signed in and wore a nametag. I kept an ongoing list of names and addresses so that the Epilepsy Foundation could send a monthly reminder about the meeting. I also distributed an updated list to the group so that people could contact each other. (Those who did not wish to be contacted did not have their name on this list.) Each month, I sent out a letter to local radio stations, TV stations, and newspapers, asking them to post a notice about the meeting of the support group. This service is generally free if the group is not-for-profit.

No two meetings were ever the same. When the group was starting, we introduced ourselves and told a little bit about our story with epilepsy. Sometimes there was an agenda and sometimes the meeting was a forum for open discussion. People would often ask questions about an issue of concern or about their medications. Many people brought articles from the local paper or the Epilepsy Foundation newsletter.

Each year we had several speakers. Any neurologist who is willing to speak in front of a group is usually a good choice. My own physician came to speak to our group twice. I wasn’t shy about calling the local neurologists who had patients in our group to ask them to speak. Several people from the Epilepsy Foundation also spoke to our group. They addressed such issues as the services available through EFNJ, the role of the state foundation within the national Epilepsy Foundation, legal issues affecting people with epilepsy, and the Americans with Disabilities Act. We even had a pharmacist speak to our group about epilepsy medications and the importance of medical alert bracelets.

I think people enjoyed coming to the group because of the diversity of the meetings. People liked the speakers and also benefited from the open discussions. Our meetings were not designed to be complaint sessions, but rather a means for people to speak to others with similar problems and help bring about positive changes.

Suggestions For Running An Epilepsy Support Group

• Encourage everyone to wear a nametag.
• Set a clear start and stop time for each meeting. Stick with the stop time!
• Ask volunteers to bring refreshments to each meeting.
• Find a meeting place that does not charge a fee. (The local hospital is often a central meeting place.)
• Encourage members to keep up with news bulletins concerning epilepsy and bring the articles for discussion. They can get information from the local papers, national magazines, the EF newsletter, and the Internet.
• Get speakers—physicians, EEG technicians, pharmacists, members of the state epilepsy foundation. Send a thank-you note to the speaker after the meeting.
• Encourage members to join the Epilepsy Foundation.
• Contact the pharmaceutical companies that sell seizure medicines. They all have patient education information and many are willing to send it for free.
• Encourage members to write to their representatives about laws concerning epilepsy.
• Encourage members to get involved in epilepsy-related fund-raisers.
• Be patient. Some people need to be encouraged to share their thoughts.
Tags: information, Epilepsy Foundation, support group, mentor