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Starting a Support Group in Your Area

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Having been support group leader for the Orange County Trigeminal Neuralgia Association (OCTNA) for 10 years, I hope to encourage you to grow a support group in your community. OCTNA’s motto is, “If you don’t feel well, you need us. If you feel better, we need you!”

Here are some tips to help get you started:

It’s not hard. We recommend keeping it simple so you can enjoy the meetings. Keep your expectations realistic. With time the group will grow.

Find a place to meet. Medical Centers, public libraries, religious institutions are a few places that may provide free meeting space. Check for hospitals in your region that treat TN; often they will offer additional support such as refreshments, access to audiovisual equipment, printed materials. Try to establish a set location. We recommend holding it in a public place instead of a personal residence.

Start with a leader. Have one designated leader who will be accountable. He/she will schedule meetings, reserve the site and delegate tasks.

Form a trusted team. It’s good to have a core group of people who will share responsibilities. We refer to our team as the Board. It’s helpful to find people with different talents. Besides my management and teaching skills, we have a retired ER nurse, a development company VP and a professional fundraiser. Over the years, people have come and gone from the board with our greatest appreciation for their service. Continually invite new members to join you.

Do everything electronically. It’s fast and free.

Create an email address for the support group. Our email address is OCTNA@aol.com. Collect email addresses from members for your email distribution list.

Have one designated phone number. Share it with the FPA National Office, support group members, and publicize it in local healthcare publications. This is usually how we receive new members.

Plan your meetings. Invite speakers. FPA Medical Advisory Board (MAB) members are willing speakers, along with physicians or CAM practitioners who treat members in your group. Skype with guest speakers from out of town or other support groups. Besides neurosurgeons and neurologists, there are a wide range of medical professionals with information for TN and NFP patients; such as dentists, psychologists, chiropractors, massage therapists. Watch a webinar on the FPA website. Share updates and literature from the FPA National Office.

A few pointers to ensure your success:

Hold quarterly meetings: that’s our recommendation. We meet in January, April, July & October. Our board meets independently and we speak with members by phone in the interim. More frequent support group meetings can result in a low turnout. You want to make the most of your efforts. The OCTNA holds its meetings on the 4th Saturday of the month from 1-3pm. I send out an electronic meeting notice on the 10th and a reminder a few days prior to the meeting.

OCTNA meetings are divided into three parts:

  1. The first half hour is devoted to welcoming and orienting new members and guests. New attendees are introduced, handouts are distributed and resources discussed.
  2. The guest speaker is introduced. We reserve an hour for their presentation including Q&A.
  3. The last half hour we conduct a “round robin” where we invite members to share about their condition. The entire group has an opportunity to offer support and suggestions for each member. The leader guides the discussion to ensure everyone has an opportunity to speak and stay on time.

I hope this gives you some insight into the mechanics of organizing a Support Group. It sounds like a lot of work at first, but it really isn’t. Take it step by step, you will be rewarded for your efforts. The OCTNA Board and I have had the privilege of helping many facial pain sufferers over the years.

Trigeminal Neuralgia was a decade-long nightmare for me, before I was successfully treated by Dr. Mark Linskey. Serving in this capacity has helped me heal emotionally and make sense of the experience. It has blessed my life in so many ways; it can do the same for you. If our OCTNA support group can be of assistance in your decision, it would be our pleasure. Just let us know.

For more information about starting a Support Group please contact the Facial Pain Association at info@tna-support.org or call us at 800-923-3608.

This article originally appeared in the Summer 2018 edition of the FPA Quarterly Journal, written by Deborah Kurilchyk, Orange County (CA) Support Group Leader.