Questions Questions

[deb]

First let me explain there are no support groups closer than 150 miles from my small rural town.

I have had a few people ask me to help them with a gluten-free diet.

I would like to start a support group in my area for those whom have a Gluten issue or have been diagnoised with Celiac's.

I know there are a lot of others in our area who could benifit from help.

I have never been to a support group of any kind

How does one start a group?

What is the usually agenda for meetings?

Does a group need to be backed by a national organization?

How often do groups typically meet?

Should any information forms or questionnaires be used?

Any & all help or suggestions will be greatly appreciated. I am hoping to get started as soon as I can.

Deb

[Lisa]

First let me explain there are no support groups closer than 150 miles from my small rural town.

I have had a few people ask me to help them with a gluten-free diet. 

I would like to start a support group in my area for those whom have a Gluten issue or have been diagnoised with Celiac's. 

I know there are a lot of others in our area who could benifit from help.

I have never been to a support group of any kind

How does one start a group?

What is the usually agenda for meetings? 

Does a group need to be backed by a national organization? 

How often do groups typically meet? 

Should any information forms or questionnaires be used?

Any & all help or suggestions will be greatly appreciated.  I am hoping to get started as soon as I can.

Deb

<{POST_SNAPBACK}>

Deb:

Check the web site for Celiac Sprue Association.  They will give you a phone number.  Give them a call and let them know that you would like to begin a support group in your area......They are all about that.  They will let you talk to someone and send you lots  of information to get started.  They would be more glad to help.

PS:  I'm all into these clickable smilies, just realized all you need to to is double click. 

[floridanative]

Deb - kudos to you! I went to my first gluten-free support group meeting just over a week ago and it made me feel like I wasn't the only freak with this wierd (to me anyway) disease. I'm lucky to have two such groups in my metro area.

Anyway, I do know that our leader mentioned about the Celiac Sprue Association. I think she said you need an MD and a nutritionist sponsor to get a chapter started. If you call their toll feel number (found on webmd.com) then you'll be on the right track as to what they'll need from you to start a new group. Sorry I don't have more info than that but I think CSA can help you from here.

I'm sure each group varies but one group here meets every other month and another meets once per quarter.

Good luck!

[lbsteenwyk]

I recently started a support group in conjunction with the hospital where I work. But you don't have to work at a hospital to get one started. Someone in our community actually approached the hospital's health education center (most hospitals have some type of community outreach center) about starting a group, then they contacted the dietitians looking for someone in the hospital to be involved with the group. So, if you can get someone in your local hospital interested in helping you to start a group, that might be a good place to start. Having the hospital involved was very helpful, because they sent out press realeases about the group and even invited us to do a radio program to promote the support group. Also, we meet at their education center, which has AV equipment, plenty of room, etc. I was able to send out flyers to all the local physicians offices through the hospital, too.

We are not affiliated with a national group, although I understand that GIG and the CSA do offer affiliations to local groups.

Our group meeets once a month. I have not used forms or questionnaires at this point, but I do have people sign in and collect their names, addresses, phone # and email for communication purposes. Our format thus far (we have just had 2 meetings) has been to have a 30 minute formal program on a particular topic (I've done label reading and the oats controversy so far), time for discussion among the group and time to sample whatever free samples I've been able to get from gluten-free food manufacturers. I also give away door prizes at the end of the program. I've had great luck getting samples to eat and give a way. People love getting free stuff!! Future meetings I have planned include: a tour and "tasting" at a local health food store, a Thanksgiving potluck meal, a discussion among the group about experiences at local restaurants, and a tour of a local grocery store chain that carries quite a few gluten-free items ( their corporate dietitian will lead the tour).

All this has taken quite a bit of time to get going, we were in the planning stages for several months, but our efforts have been very successful. We had 16 people at our first meeting and over 20 at our second. (I live in a small sized community). I expect our numbers to grow as the word spreads. People have been very greatful for the opportunity to attend a local support group.

If you have further questions, feel free to PM me. Good luck with getting a support group started.

[deb]

Thanks for all the suggestions.

I have sent emails to GIG & CSA.

I will contact our local hospital next week. I used to work there & know the Education Director. What a great suggestion. I know she would love to help me. If you think of anything else or if someone else has suggestion, keep them coming.

Thanks

Deb

[Jnkmnky]

R.O.C.K. started by Danna Korn is really good. You get everything you need, advice, ideas, the use of the logo and insurance for your group.

[Sue Bob]

I will be traveling to Ashville, NC and I am wondering if anyone can recommend any places to eat while we are there.

Thanks,

Sue