Starting A Local Celiac Support Group! Help!

[Miss Emily]

I recently attended the local Celiac support group in my area. Unfortunately, I was very disheartened with the way it was run. For one, misinformation was being given to new members and there was no order in how the group was to function. After months of building up the courage to attend one of the meetings, it was so frustrating to not feel supported. After coming home in tears, I decided to try another support group in a larger city. The following month, I attended that meeting as well. It was worse than the first In my therapy session the next day, my therapist suggested writing down exactly what I am looking to gain from being in a support group. She said that the only way to find what you want, is to know what you need. So, I went home a made my journal entry for the day. This entry turned into a brainstorm, then five pages of ideas! It was then I decided to start my own group. (Now, I do wish to state that everyone is looking for something different. And, for some, maybe those groups were exactly what they needed. I also respect and acknowledge the hard work and efforts of the group leaders who run those groups. I imagine that in some way they are only trying to help. Therefore, I am not criticizing, only suggesting another way.) This new support group will serve West Michigan and is called Lake Michigan Celiac Support. I have started on the website www.lakemichiganceliacs.com and am currently working on a location and advertising. I hope to have the first meeting the first Monday of next month. This forum has been the single BEST thing since I was diagnosed with Celiac. Before I became a member I lived and breathed the information I found on the gluten free forum! I knew when I decided to start this group that I would find unconditional help and support through the members here. So, please let me know any words of wisdom you might have, feedback on the website construction, what you would want to see, etc. Thank you Thank you Thank you!

[mamaw]

Hello

It is great you wish to start a gluten-free group. I did just that about a year & half ago. Here are a few questions that is not clear to me. Is your new group part of the CSA or the GIG or neither? If there is already two groups within traveling distance will another draw people?

I don't mean to discourage you but to give help on your journey. I started a group on my own with my own money & my own sweat & tears.... today I still do not charge a fee for attendees. We do pass a basket around to help defray costs of paper products , beverages & such....

Are you meeting monthly?

Where will you meet? Cost?

What will the agenda be? Who we do the speaking? Cost?

Will there be speakers? Cost?

Will there be vendors/bakers allowed to sell?

Will you have samples to pass out?

Will you have a knowledgeable medical staff in case a medical issue comes up?

Will there be a person who has extreme knowledge of what being gluten-free actually curtails?

Will there be a person who can give info on gluten-free products & where to find them?

Will people be permitted to bring in homemade gluten-free foods to share? If so, you must know that these products are truly gluten-free or else someone may just file a lawsuit.( idf they get ill) Newbies who are learning themselves should not be sharing foods until you are sure & trust them.

These are just a few questions that you may want to ask yourself.

It takes a lot of planning & fore thought to get a group thriving. It is not easy.

Very few may want to jump on the bandwagon & help. ie: prepeare, speak, clean-up!

We do much in bulk ordering which is a win win for everyone. But again someone has to foot the up-front bill for this.

I do a lot of test marketing gluten-free so I have the most updated new gluten-free foods available. I also am able to secure new product samples which is again a win win. I also know the best of the best in gluten-free so this helps so people don't waste their hard earned cash on things the dog will not eat!

I can tell you I have resourses all over the world that helps me bring the most updated in about the gluten-free lifestyle. I tend not to get into medical issues as I'm not a doctor. I do refer peopel or suggest they see a doctor & give them the info for testing. We also have a statement saying what we are & what we are not......legal issues that may crop up ...I have been gluten-free for years & each day I learn sometrhing new in the gluten-free arena. I spend about four to five hours at least four times a week to get the best imformation & correct info available. Everything you read on the net may not be true or correct so you must have knowledge of this.

If you plan on continuing with the group I will suggest a live radio talk show answering questions live. And a big newspaper write-up to get the public imformed of the group.A meet & greet for a first meeting is always good with a sample bag of goodies for each attendee. Everyone loves something for free.....

Hope this helps

mamaw

[Miss Emily]

Hello

It is great you wish to start a gluten-free group. I did just that about a year & half ago. Here are a few questions that is not clear to me. Is your new group part of the CSA or the GIG or neither? If there is already two groups within traveling distance will another draw people?

I don't mean to discourage you but to give help on your journey. I started a group on my own with my own money & my own sweat & tears.... today I still do not charge a fee for attendees. We do pass a basket around to help defray costs of paper products , beverages & such....

Are you meeting monthly?

Where will you meet? Cost?

What will the agenda be? Who we do the speaking? Cost?

Will there be speakers? Cost?

Will there be vendors/bakers allowed to sell?

Will you have samples to pass out?

Will you have a knowledgeable medical staff in case a medical issue comes up?

Will there be a person who has extreme knowledge of what being gluten-free actually curtails?

Will there be a person who can give info on gluten-free products & where to find them?

Will people be permitted to bring in homemade gluten-free foods to share? If so, you must know that these products are truly gluten-free or else someone may just file a lawsuit.( idf they get ill) Newbies who are learning themselves should not be sharing foods until you are sure & trust them.

These are just a few questions that you may want to ask yourself.

It takes a lot of planning & fore thought to get a group thriving. It is not easy.

Very few may want to jump on the bandwagon & help. ie: prepeare, speak, clean-up!

We do much in bulk ordering which is a win win for everyone. But again someone has to foot the up-front bill for this.

I do a lot of test marketing gluten-free so I have the most updated new gluten-free foods available. I also am able to secure new product samples which is again a win win. I also know the best of the best in gluten-free so this helps so people don't waste their hard earned cash on things the dog will not eat!

I can tell you I have resourses all over the world that helps me bring the most updated in about the gluten-free lifestyle. I tend not to get into medical issues as I'm not a doctor. I do refer peopel or suggest they see a doctor & give them the info for testing. We also have a statement saying what we are & what we are not......legal issues that may crop up ...I have been gluten-free for years & each day I learn sometrhing new in the gluten-free arena. I spend about four to five hours at least four times a week to get the best imformation & correct info available. Everything you read on the net may not be true or correct so you must have knowledge of this.

If you plan on continuing with the group I will suggest a live radio talk show answering questions live. And a big newspaper write-up to get the public imformed of the group.A meet & greet for a first meeting is always good with a sample bag of goodies for each attendee. Everyone loves something for free.....

Hope this helps

mamaw

Hi MamaW! Thank you for advice. Okay, so to answer your questions...

I have spoke with both the CSA and GIG, I have not yet decided if I would like to be an independent group or extension of these official associations. I am weighing my options there and deciding what will work best for our group. For one example, both groups I attended were CSA groups. This frustrated me as it seemed there was no regulation or review of these groups and how they were run.

I do believe that there will be several individuals interested in joining. After both meetings I was overwhelmed with members coming up to me with questions and requesting information. It is not that they need just any support group. They are need a group with legitimate information from educated sources. Also, both groups will be an hour away from my location.

As far as money goes, I have several companies willing to donate small amounts ($50 to $500) to get me started. Most of these companies are owned by friends and family.

I have prepared new member packets including gluten free guides, recipies, newsletter, by laws etc. I am leaning towards not requiring dues or membership fees. I would like some input there.

The local library and hospital have offered communtity rooms to hold the meetings and I am in the process of deciding which would be more beneficial.

I also have an agenda prepared and viewable on our site.

I have yet to decide upon having a member of the medical community present at each meeting. I consider myself a professional patient and have based my knowledge upon reading materials regarding celiac, dh, the GI tract in general, medical journals, food intolerance and chronic illness literature, etc. Although I will of course consult my gastroenterologist and find a local physician to attend regular meetings. My goal is not to simply have a member of he medical community present, but to have a physician who is thoroghly educated on celiac disease and dh. (Which can be difficult to find!) My therapist has also agreed to come and help moderate now and then. I beleive this will be beneficial for structured sharing time.

At the beginning I will be providing snacks at a break time and they will be allergen free. As I don't think it is fair to have to watch others eat something you can't at a celiac meeting! I am soy and dairy free and it was so frustrating to not even have a safe zone at my support group. Later, I plan to come up with a group appropriate snack list.

Thank you for your information on legal issues. I have been offered a consulation with a family friend's attorney who is willing to help me draw up By Laws, Confidentiality, Etc. However, any advice you could give would help!

I love the idea of the sample bags.

My biggest concern is about getting the word out about the group. I am trying to utilize all of my connections!

[Miss Emily]

This was what I currently have for a format:

LMCS Meeting Format

5:30-6pm The first 30 minutes of the meetings will be dedicated to new members or those newly diagnosed and will include a briefing on Celiac Disease, Gluten Free Living, and dispensment of Educational Materials. All members will be welcome to join.

6pm Meeting Officially Begins, Statement of LMCS By-Laws/Confidentiality

6-6:15pm Brief Introductions

6:15-6:30pm Monthly Focus Topic/Relevant Reading

 Related Illnesses

 Eating Out

 Friends and Family

 Publications

 Gluten Free Hospital Stay/Medical Cards

 Gluten Free Personal Products

6:30-7:15pm Structured Sharing

7:15-7:30pm Break/Snacks

7:30-7:50pm New Products

7:50-7:55pm Inspiration Quote

7:55-8pm Feedback Survey

8pm Meeting Officially Ends

8-9pm Group members are welcome to join us at Coffee Shop for informal conversation and additional Q & A.

[mamaw]

Hi

You are fourtunate to have access to so much help........Newspaper , radio, local TV & sending out flyers to doctors & hospitals help to get the word out.

Both the CSA & GIG have laws & rules so each group should be abiding by them. It sounds like that may not be happening!

I choose not to join any group & stay independent....again you are lucky to have friends help defray the cost. We have no shopping (gluten-free) no hospital that knows about gluten-free in the immediate area & no doctors, so I'm it for my area.....the closest is about an hour away. That is why our group likes the mini-coop ..............nothing here.

We have had some wonderful speakers & vendors/bakers........Our talks are about 1 to 2 hours long. Q&A after every one.... newbies are my favorite but people who have been eating gluten-free for years still has many questions. Information changes so quiskly these days. It is best not to get into medical issues if you aren't a doctor. I never give medical advice I leave that for a professional with a license.... I may have my thoughts but I only tell them if after all other testing & everything else fails ask for celiac testing. this way I'm not liable for telling someone they may have this or that. People turn words around so stay middle of the road even if a doctor tells you use it for your info but it is the doctor who needs to state it to a person.....Many times after a dx's the only thing people want is good food & they don't seem to care about updating gluten-free news.. so after awhile some drop off the radar except when its time to order gluten-free food....

Even at conferences I see meeting rooms less crowded but the vendor room filled..... After all the bottom line after dx's is gluten-free food........

We do one topic each month & each month do a product review & new foods..

Always samples....

What kind of therapist? Just curious......

blessings

mamaw

[Miss Emily]

Hi

You are fourtunate to have access to so much help........Newspaper , radio, local TV & sending out flyers to doctors & hospitals help to get the word out.

Both the CSA & GIG have laws & rules so each group should be abiding by them. It sounds like that may not be happening!

I choose not to join any group & stay independent....again you are lucky to have friends help defray the cost. We have no shopping (gluten-free) no hospital that knows about gluten-free in the immediate area & no doctors, so I'm it for my area.....the closest is about an hour away. That is why our group likes the mini-coop ..............nothing here.

We have had some wonderful speakers & vendors/bakers........Our talks are about 1 to 2 hours long. Q&A after every one.... newbies are my favorite but people who have been eating gluten-free for years still has many questions. Information changes so quiskly these days. It is best not to get into medical issues if you aren't a doctor. I never give medical advice I leave that for a professional with a license.... I may have my thoughts but I only tell them if after all other testing & everything else fails ask for celiac testing. this way I'm not liable for telling someone they may have this or that. People turn words around so stay middle of the road even if a doctor tells you use it for your info but it is the doctor who needs to state it to a person.....Many times after a dx's the only thing people want is good food & they don't seem to care about updating gluten-free news.. so after awhile some drop off the radar except when its time to order gluten-free food....

Even at conferences I see meeting rooms less crowded but the vendor room filled..... After all the bottom line after dx's is gluten-free food........

We do one topic each month & each month do a product review & new foods..

Always samples....

What kind of therapist? Just curious......

blessings

mamaw

Educating hosipitals is a good point, I once was brought saltines and fruit juice in my hospital bed. Lucklily I was able to speak for myself and say absolutely not! I even had an allergy wrist band on (which I had to fight to get in the first place!). I wonder how one can become a medical advocate for Celiac patients. It would be nice to perhaps give seminars and instruction to interns, nurses, etc. about caring for a patient with celiac disease. Also, set up a support system for getting food to those patients that is safe! But, legality is always an issue and I can only imagine how tricky that would be to pull off :/

I know people love free food, and that is great, but we are fortunate to have gluten free items available around here (not like a Whole Foods or anything, but some). My main focus will be group sharing and education. I have met lots of people who want to share their feelings and experiences and know that they are not alone! I was planning to have a focus topic each month and begin with a related reading followed by structured sharing. This would be the body of the meetings.

I will take your advice on the medical terminology as well. I think I will speak will an attorney and get the facts about what I can and cannot say and a disclaimer to share with the group before discussion. I am also going to focus the group on diagnosed Celiacs, not gluten intolerant or wheat allergy. Even if the group stays small, it is important to me that those with Celiac and their friends and families get accurate, not confused information. And, also that they feel they are among complete peers as much as possible in the medical sense.

I would love some information about how to obtain samples for goody bags and snack/break time. It would help out a great deal, as a box of Enjoy Life Allergen Free Snack Bars costs $6 here!

My therapist is CAC-1, LMSW. Is that what you mean? Through working with me she has learned a great deal about Celiac and chronic illness in general. Most of all, I believe she will fill in where I leave off with emotional support.

Thank you so much for responding and guiding, you have gotten me thinking about many more ideas! Please keep 'em coming!

[ChemistMama]

Hi Emily-

You are very ambitious!! Let me give you some suggestions from someone who's done some nonprofit work:

1. Take advantage of the national groups if you can, it will save you a lot of work and give you a network of support (not to mention pre-made by-laws!).

2. You may want to start with a more casual meeting ; I've found that if you bombard newbies with too much information or structure the first time you scare them away. Having a 'meeting' before the meeting actually begins will confuse some, why not have a separate meeting for new people? You may want to visit glutenfreeindy.com to see how they organize their meetings; they have special newbie meetings at certain times, as long as you sign up in advance. In our local meeting, we have introductions of new members, then the chairperson talks about a topic for awhile, we all share new news (product or health related), and then spend the rest of the meeting chatting and eating from items people have brough to share. Our newsletter focuses on informing members of new books, food products, and research, as well as other area support group's events (of course with a disclaimer!) . We don't have an invited speaker each time, also.

3. Get help!! Start with simple meetings to bring others into your circle, then utilize them to get the group going. I know from experience that if one person alone runs a support group/nonprofit it (1) stresses out the person running it and (2) makes other members feel like they're not needed, so they drift away. A core group or 'board' can make the group run smoother, if you're in agreement as to how it should be run!

4. WHen it comes to medical knowledge, you may not be able to afford to have a professional there for every meeting to answer questions. What I would do is offer ways to get the information. Our group has a lending library, with cookbooks and other celiac books which members can check out and review until the next meeting. Very helpful, and you get to choose the ones they can borrow!! The best part of our meetings is that members have been able to inform others of doctors in the area that are actually familiar with celiac.

5. Some sites put together packet of information for newly diagnosed patients, to email to new people interested in joining so that they can read up on things before coming to the meeting. Go to glutenfreeindy.com and email Diane for some help.

Good luck to you!!

[Miss Emily]

Hi Emily-

You are very ambitious!! Let me give you some suggestions from someone who's done some nonprofit work:

1. Take advantage of the national groups if you can, it will save you a lot of work and give you a network of support (not to mention pre-made by-laws!).

2. You may want to start with a more casual meeting ; I've found that if you bombard newbies with too much information or structure the first time you scare them away. Having a 'meeting' before the meeting actually begins will confuse some, why not have a separate meeting for new people? You may want to visit glutenfreeindy.com to see how they organize their meetings; they have special newbie meetings at certain times, as long as you sign up in advance. In our local meeting, we have introductions of new members, then the chairperson talks about a topic for awhile, we all share new news (product or health related), and then spend the rest of the meeting chatting and eating from items people have brough to share. Our newsletter focuses on informing members of new books, food products, and research, as well as other area support group's events (of course with a disclaimer!) . We don't have an invited speaker each time, also.

3. Get help!! Start with simple meetings to bring others into your circle, then utilize them to get the group going. I know from experience that if one person alone runs a support group/nonprofit it (1) stresses out the person running it and (2) makes other members feel like they're not needed, so they drift away. A core group or 'board' can make the group run smoother, if you're in agreement as to how it should be run!

4. WHen it comes to medical knowledge, you may not be able to afford to have a professional there for every meeting to answer questions. What I would do is offer ways to get the information. Our group has a lending library, with cookbooks and other celiac books which members can check out and review until the next meeting. Very helpful, and you get to choose the ones they can borrow!! The best part of our meetings is that members have been able to inform others of doctors in the area that are actually familiar with celiac.

5. Some sites put together packet of information for newly diagnosed patients, to email to new people interested in joining so that they can read up on things before coming to the meeting. Go to glutenfreeindy.com and email Diane for some help.

Good luck to you!!

Thank you, I will take all of those suggestions into consideration!

[Mrs. Smith]

I am also trying to start one in my area. These suggestions really helped. Thanks. Good luck to you!

[mamaw]

Hi

Here are a couple of places to get you started on freebies. Mary's Gone Crackers, Pamela's, AMy's, Ener-G, Goldbaum's, pure fit, zing bars.

Our group is a gluten free group that way everyone who is following the gluten-free diet can attend & also buy from the mini coop.....Yes, they still can come to a celiac meeting but that type usually just focuses on celiac. Since some many are following the diet I wanted to make it a learning & fellowship for all.

Joining the CSA or GIG is wonderful if that is the way you wish to go...but you will have laws & such you should abide by. I know you stated that you didn't feel the two groups you attended did that. That is too bad.....

There was a very big Csa group about an hour away for over fifteen years, but it was very hard to get people to do anything & the group leader was wonderful. I didn't attend because of time issues..In todays world people are so busy that they are not willing to give much time. I have a friend who does fundraising & she volunteers for our group . SHe has noticed the same thing in our area......I don't mind handling most everything but giving back is what I do since I retired... Yes, it can get hectic but I managed a company & had 1300 employees scattered across the state so this is okay.

If we only could teach hospital staff. Our hospital sends newbies to me so they don't have to deal with them...there are several people who charge for this service but I can't justify charging people for their misfourtune of illness. I'm just so thankful to have found my problem before I ceased to breathe!!!!It is a great joy to be able to help someone find their craving gluten-free....

At the beginning I did a couple of months of info to bring everyone up to par so we all are on the same page. I now meet with newbies one on one so they can ask questions & such without making others who already know this info listen to it over & over. I always give a date & time to everyone so oldies can refresh if they care too.

We discuss the illness itself but again I make no judgement calls & after dx's or self-dx'ing the only thing left is the gluten-free lifestyle so that is mainly our focus.

The main thing I find is people have no idea what is or not gluten-free at the grocery so they all love updates. Restaurants serving gluten-free across the nation.And the mini coop because everyone saves money.

I actually have some cry when I bring gluten-free foods that are the best not ho-hum but excellent gluten-free foods that can be enjoyed & Savoured..

Meet & greet is the best way for a first meeting.Give some plans about future meetings, give a ways.. I had 25 people sign on to help. When you call them on it they all will not come through & help...

We do not share email address' of our members . If a person wants to give out their phone number or addy they must do it on their own...And I never give out names to another party...

Take your time & it will all fall into place.....

blessings

mamaw