Epilepsy Talk

How to Start Your Own Adult Epilepsy Support Group | August 14, 2019

One thing I’ve discovered is the search for support groups is endless — and seldom successful.

Especially now that charitable contributions are tight and epilepsy centers have had to cut expenses. (Yes, our support is considered an “expense”.)

That’s why I’ve put together this short guide on how to form your own Epilepsy Support Group.

But, if you do start an Epilepsy Support Group, you’ll find an amazing wealth of camaraderie, compassion and caring.

Not to mention the sharing of resources, community, education and awareness.

I started mine by going to a local hospital and my Epilepsy Foundation and putting forth the suggestion.

They were open to the idea and willing to take the time and make the effort.

The same may be true of your efforts.

We have an established time and place to meet…with some materials available…snacks…and occasionally a guest speaker.

Plus, everybody gets their fair share of time in with questions, suggestions and even resources not everyone’s familiar with.

I know that starting a support group is definitely not for everyone. However, there are resources available where you can get the help – and materials – you need.

The Epilepsy Foundation, as I found out, can help and some local affiliates can provide information and referral assistance.

To find one in your area simply go towards the bottom of the page, enter your zip code, state and hit “search.” http://epilepsyfoundation.org/aboutus/AffiliateLookup.cfm

There’s another interesting group I found called “Epilepsy Meet-Up” where you can meet other local people with epilepsy. Friends and family members are also welcome.

On the site, there’s an interactive map of Epilepsy Meet-Ups around the world. (And if you want to start or find a support group, this could be a good place to know about!) http://epilepsy.meetup.com/

“Add Coach” provides advice on how to start and run a support group. http://www.addcoach4u.com/support/howtostartasupportgro.html

You’ll find support resources by category, such as:

How to Start a Support Group – Articles

How to Run a Support Group – Articles

Connections to Self Help Organizations

Manuals and Workbooks for Starting and Running Support Groups

Support Groups and Professionals

Why Start a Support Group?

Links to Canadian, American and International ADHD Support Groups

Look them up and you can be off and running!

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  1. 60477 Illinois


    Comment by Kathleen — August 18, 2019 @ 12:18 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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