Any Support Group Leaders?

[burdee]

I'm assuming leadership of our local celiac support group. We have 2 groups in our area, but our group members went MIA when our leader resigned and nobody stepped forward. After reconsidering my time and priorities, I volunteered to assume leadership. I want to make our group focus different from the other local group, so that we discuss how we handle our individual celiac (and other food intolerance) challenges, rather than just consider global or political celiac issues (which are very important but well covered by the other local group). I led several 4 different support groups in my churches and enjoy facilitating discussions. We're currently seeking a nonrestaurant location which allows everyone to hear comments without those interfering side conversations which occur in restaurant settings. I'm very excited to lead this group in a new, more personal direction, but would like to hear from other local celiac support group leaders. Are there any leaders who would share their group discussion ideas? I will welcome local speakers and demos at our meetings, but insist my group members arrange for those, so I don't burn out trying to do EVERYTHING. I learned my limits while leading previous support groups. I would love to hear feedback from any celiac support group leaders.

BURDEE

[jenvan]

Burdee-

Well, I'm not our group leader, but I'd consider myself to be one of the more dedicated members Our group meets in a multipurpose room at a small library...might be a possibility for you too. Different individuals usually bring in homemade or packaged gluten-free snacks. Unlike another local group, ours is pretty unstructured. The leader will bring in current news, articles, updates, research and pass those out. She will then highlight key points from each of those. Then she opens the floor for discussion, questions. It seems we have new individuals at each meeting, so we hear their story and try and help when possible. Do you get any newsletters? That might be a good resource for you. The Chicago Celiac Center and the Columbia Celiac Center each put one out. You can subscribe for free...might help you spread new info to your group. Good for you taking the lead--good luck!

One other possibility...do you have any local places that have gluten-free food? We had a new shop open up locally that baked gluten-free goods and sold gluten-free products. The store owner came in to speak to us, that was a good resource too.

[Katydid]

I am not the leader, but very active in our local support group. We meet at a church and have use of the kitchen facilities. Our meeting is always a potluck, but new members are excused. We end up with the most beautiful spreads of gluten free food you can possibly imagine.

The rule is that you have to bring the recipe (or brand or package) for the dish you bring. The leader collects the recipes and later recaps the meeting and sends the recap and recipes to everyone via email or regular mail. That way, even the members that miss can keep informed. No matter how long you've been at this, you still continue to learn from others. There are contributions from the group regarding a new food find, restuarant, cross contamination, doctors, etc. Just like all of the things we discuss here on this forum.

Its very heart warming and we wouldn't miss it for the world. I remember one time a man got up with a tear in his eye and thanked whoever brought the rye (mock) bread. Said he had been missing it so much and he just couldn't believe it was gluten free. (I remember that one because it was my rye bread) I had been trying to come up with a recipe for one of those delicously dark dark chocolate cakes and lo and behold it showed up on the potluck table. Come to find out it was Namaste Chocolate Cake Mix, but I wouldn't have known that otherwise. One of our members is even opening a gluten-free restuarant in about a week or two. We can hardly wait. She will have everything,..pizza, pasta, sandwiches, dessert.

Good luck with your group. You are a saint, but always ask for members to help so you don't get too overwhelmed to enjoy it.

Best Regards

Kay

I'm assuming leadership of our local celiac support group.  We have 2 groups in our area, but our group members went MIA when our leader resigned and nobody stepped forward.  After reconsidering my time and priorities, I volunteered to assume leadership.  I want to make our group focus different from the other local group, so that we discuss how we handle our individual celiac (and other food intolerance) challenges, rather than just consider global or political celiac issues (which are very important but well covered by the other local group).  I led several 4 different support groups in my churches and enjoy facilitating discussions.  We're currently seeking a nonrestaurant location which allows everyone to hear comments without those interfering side conversations which occur in restaurant settings. I'm very excited to lead this group in a new, more personal direction, but would like to hear from other local celiac support group leaders.    Are there any leaders who would share their group discussion ideas?  I will welcome local speakers and demos at our meetings, but insist my group members arrange for those, so I don't burn out trying to do EVERYTHING.   I learned my limits while leading previous support groups.   I would love to hear  feedback from any celiac support group leaders. 

BURDEE

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[burdee]

Thanks so much, Kay and Jen, for your feedback. I have previously attended the support group for which I just assumed leadership and helped the leader a LOT (by keeping the member roster, getting free goodies from gluten-free food sites and doing advertising). However, I sat powerlessly listening while group discussions deteriorated into 'poor me, I have celiac disease' victim stories or "the government, food companies, etc. are trying to poison us" scare stories, when I was only a member. I intend to keep our discussions positive and SOLUTIONS oriented, so we don't lose members who get bored with soap operas or angry paranoid discussions.

We have previously met at a totally gluten-free restaurant, but the restaurant structure (small tables in a basically rectangle room) allowed too many side conversations to occur during group discussions. I'm looking for a community meeting room where we can place the chairs in a circle so everyone can hear everyone else. I also found another topic in this section on support groups about all the gluten-free food sites who offer free samples to groups and plan to write to many of those. I'm wary of even celiac group potlucks because many of our members (including ME) have other food intolerances besides gluten. We had a cookie exchange last Christmas and many people did not realize lactose free was not casein free. Others did not realize many shortenings or dairy free margaries were soy based. (I also have soy and dairy intolerances.) However, I LOVED the recipe exchange idea. Perhaps we could modify that for our meeting format. Thanks Kay!

I do get a couple of newsletters, but will check out the 2 you mentioned, Jen. There is another local celiac support group which focuses more on celiac community, political, global issues. I intend to focus on our individual, personal struggles (like ongoing symptoms and how to cope, etc.), so that we can offer something different at our meetings to people who attend both groups.

Since we're trying to avoid a restaurant setting, another member of our group suggested starting a 'celiac supper club' where we could storm a local restaurant en mass and request 'safe' entrees with all our special needs. Of course, we'll call ahead and check out the restaurants. Many of us LOVE eating safe meals with other celiacs, but I believe we would have more time for discussion if we just brought celiac treats or free samples and ate meals outside our meetings.

Thanks for all the feedback, Jen and Kay. Has anybody else led support groups? Do you have other ideas?

BURDEE

[MarcieCoda]

We've recently joined forces in SLC UT, St Mark's Hospital Group and the Primary Children's Hospital Group. Interestingly, we were afraid of the change in date for one meeting time over another. The nice part is we are 4 leaders strong now! If I could say only one piece of advice is create a team of leadership. It's the most rewarding feeling for everyone. You don't have to worry about doing everything YOURSELF.

First and foremost, check out so many of the differenct leadership or group websites. I've been perusing for ideas for meetings & new fundraising ideas. Everyone has such great ideas and some great gluten-free Gatherings are coming up on the calendar of events. Thanks to everyone for listing their ideas and events.

The last thing is get plugged into the larger Non Profit Gluten Intolerance support groups! GIG or CSA, depending on your thoughts on each one. We've signed up with GIG and Love it. The support, information, back-up and incredible events we've been putting together in SLC with their help.

Check out the National GIG Conference coming up in SLC UTAH, Yahoo! We are excited for all the recent new's articles coming up in Salt Lake City newspapers.

We are such a growing community and it's feeling awesome. I'm a wife of a celiac spreading the word too!

Marcie

www.gfutah.org

slc gig group

[burdee]

Thanks, Marcie! We have a local GIG office/branch. So our other local celiac support group is a GIG group. I've considered becoming a CSA branch group just to offer a different approach. What's your opinion/experience with CSA? I also learned from leading previous support groups to NOT assume responsibility for EVERYTHING. I stated in my intro letter that I will only lead meetings and facilitate discussions, but others could arrange for speakers, demos and a different meeting location and simply inform me what they found. Several members have already stepped forward. Another member (who has subbed regularly as a leader when our previous member was absent) told me she would love to be my 'prime minister' if I became 'queen'. Nevertheless, I keep her posted on everything. I can also rely on the former leader for morale support. Setting clear boundaries about 'leadership' responsibility can encourage others in the group to take responsibility and do what they do well.

BURDEE

[celiac3270]

Hey, Marcie! Are you Tim's wife? I met him in Chicago (GIG conference) and knew him from the Delphi board.

Burdee, I posted under another topic (samples for support groups) having not seen this topic:

Actually, do you know the St. John's Listserv? They have a list for just general celiac stuff, but they also have one for doctors, one for support group leaders, etc. You need to provide verification that you actually lead the support group--like, the name of your group, etc. That might be something to look into. And have you been to the Delphi board? I know quite a few people there that head up the support group -- Tim Coda (gfskier)--actually, I think he told me that his wife played a huge part in setting up the group, so she is the head in name, Chris Spreitzer (SPREITZER), and a few others....

[celiac3270]

The last thing is get plugged into the larger Non Profit Gluten Intolerance support groups!  GIG or CSA, depending on your thoughts on each one.  We've signed up with GIG and Love it.  The support, information, back-up and incredible events we've been putting together in SLC with their help.

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Excellent point. GIG is a phenomenal group...I love it and personally think that the CSA is a little...misguided. For example, they opposed the food allergen labeling bill. Just ask Richard (lovegrov on here, or kegler4 on the delphi board) about the CSA and he'll give you an earful...lol.

[burdee]

Thanks for the CSA feedback, celiac3270. WHOAAA!! Enough said. Maybe I'd better make our group a GIG group, since they're already very active in our Seattle area. We sure love their annual walks which feature many gluten-free food reps with free samples.

BURDEE

[celiac3270]

Absolutely...their headquarters is in Seattle!