Starting A Support Group

[strawberrygm]

i am going to start a support group here in my local area.

i dont have the funds to join any of the patented groups like ROCK, so i guess i will just form my own little group.

i will either have the meetings at our library or at my church.

i need a name for my group -- my city is savannah -- so i thought of savannah sillys -- but i dont want to take away from the seriousness of celiac with the word silly -- however, you gotta laugh and have fun to cope, right?

any other suggestions?

also, i plan to gather info and send to my local paper to run an educational bit on celiac, and announce the supprt group and its first meeting.

how often should a group meet to be helpful/effective? monthly/bimonthly?

i am assuming we should have gluten free snacks....do some companies send these to groups for advertising?

any thoughts, ideas, etc you have would be great!!

thanks!!

[Lisa]

I think it's great for you to start a support group in your area.

The Celiac Disease Foundation has some wonderful start-up information. You can contact Deborah Ceizler at this link. Through this organization, you will recieve offers from new companies to sample their gluten free products for your group.

Open Original Shared Link

Good luck and thank you for your support.

[Gluten-Free Guy]

Another resource in the Celiac Sprue Association at www.csaceliacs.org with support group chapters all over the U.S.

I belong to a long-established support group with 500 members. About 50-60 usually come to the monthly meetings, but we have about 125 at our Thanksgiving Potluck. For montly meetings, members make gluten-free foods and snacks at home and bring copies of recipes to share. Other members buy gluten-free foods to bring. It's all voluntary, however. We sometimes seek samples from manufacturers and we have local bakeries, etc., who ask to come to meetings to demonstrate their gluten-free wares.

At each meeting, there is some kind of program of interest to celiacs. At the end of the meeting, newly-diagnosed members are invited to stay and meet with experienced, well-informed members for answers to questions and help in getting into the diet and the lifestyle.

We suggest donations, but do not charge membership dues. We have a quarterly newsletter that is quite informative and is mailed or emailed to our 500 members. Membership grows every month because people are being diagnosed more frequently than in the past.

While getting started, publicity will be your biggest issue. Your newspaper article is a good start. However, we have found the most effective method to be through doctors, gastroenterologists, dermatologists, etc. We provide an information card for the physicians to give to newly-diagnosed patients. It works well.

We also have a help-line that newly-diagnosed people can call for information to get started on the gluten-free diet and lifestyle. One of our very knowledgeable members answers the calls at her home.

It would be good to establish your group through one of the national celiac organizations rather than strike out as an independent.

[jerseyangel]

One of our members here, Mamaw, has started a support group in her area--if she doesn't see this, you could PM her.

[strawberrygm]

thanks gluten-free-guy and jerseyangel.

i appreciate both of your help very much.

i appreciate the tips you gave me, gluten-free-guy, on the happenings of meetings, etc. it will be very useful to me.

and jerseyangel, i will certainly send your friend a pm, thanks for letting me know!!

[USF1970]

WOW....am I ever glad to hear from you. We could SURELY use some help. I am the branch manager (I'm using that term loosely as I don't have time to do much managing) of the Savannah Celiac Support Group. Are you relatively new to Savannah? We've been organized since about 2004 and the local newspaper has been WONDERFUL to us. Here is a link to the first article they did on celiac disease:

Open Original Shared Link

I was a bit embarrassed that the story focused on me but it did get the word out. We now have about 100 people on our email list. We also had another nice story in 2005:

Open Original Shared Link

Nancy Wheeler was our then branch manager and did a lot. But she's moved to New York City and everything has once again fallen into my lap.

Since you mentioned ROCK, is it your child who has celiac disease? We have a number of members whose children have the disease.

I am VERY anxious to talk w/you. Please respond privately to this post and I will provide you w/my home phone number although it is also on the GIG website.

Hoping to hear from you soon, Linda Ostrow

[strawberrygm]

WOW....am I ever glad to hear from you. We could SURELY use some help. I am the branch manager (I'm using that term loosely as I don't have time to do much managing) of the Savannah Celiac Support Group. Are you relatively new to Savannah? We've been organized since about 2004 and the local newspaper has been WONDERFUL to us. Here is a link to the first article they did on celiac disease:

Open Original Shared Link

I was a bit embarrassed that the story focused on me but it did get the word out. We now have about 100 people on our email list. We also had another nice story in 2005:

Open Original Shared Link

Nancy Wheeler was our then branch manager and did a lot. But she's moved to New York City and everything has once again fallen into my lap.

Since you mentioned ROCK, is it your child who has celiac disease? We have a number of members whose children have the disease.

I am VERY anxious to talk w/you. Please respond privately to this post and I will provide you w/my home phone number although it is also on the GIG website.

Hoping to hear from you soon, Linda Ostrow

oh linda.

i am from savannah, tn. not georgia. i am so very sorry.

i will pm you anway.