Thursday, May 24, 2012

How to Start a Local Gluten-Free Support Group

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5 Tips for Starting a Gluten-Free Support Group
Written by Carrie Forbes
For Celiac Awareness Month, May 2012, in conjunction with the National Foundation for Celiac Awareness blog

I started my local gluten-free support group in January 2010. It took six months for me to find the courage and enough people to put together a meeting! (It also helped that my friend Jaime twisted my arm into organizing it!) We had 6 people at our first meeting and that included myself, my husband, and my fearless mother-in-law! Our first meeting focused on local gluten-free resources and restaurants who could cater to a gluten-free diet.

Once the school year started again we began having regular monthly meetings and eventually added what we call "coffee breaks" several times a month. The coffee breaks were more informal times just to get together and chat, have coffee, and talk about all things gluten-free in our area.

As the group has morphed and changed over the past two years we now have bi-monthly meetings and once-a-month coffee breaks. We now have about 25 active members who come to our meetings and over 45 members we connect with locally through email and Facebook, and the group is continuing to grow. Most recently our group became affiliated with Danna Korn's R.O.C.K. (raising our celiac kids) support group. I chose for our group to join this organization over other national groups because the premise of this particular group first and foremost is to have a positive attitude towards being gluten-free! Life is good! And even though being gluten-free can be a challenge, it doesn't have to be a sad or negative experience! I love Danna's philosophy on this!

Secondly, I felt this organization would meet the needs of many in our area who are raising gluten-free kids! I realized there was a primary need for us to make sure that kids felt included and welcomed in our local gluten-free support group!

However, gluten-free support groups come in ALL different shapes and sizes. In addition to my thoughts on the best tips to share with others; I consulted with three other very different gluten-free support group leaders to share a variety of expert opinions.

  • Sarah Neilson is the author of Celiac in the City and is the leader of her local gluten-free DINING group: Gluten Free Milwaukee. Sarah’s group is composed mostly of adults and this group finds local restaurants in the area who will cater to a gluten-free diet. They share one meal a month at different restaurants. 
  • Nikki Everett is the CEO and Event Coordinator of ECHO Event Solutions, the company which has brought together numerous Gluten-Free Expos in the southeast US. Nikki also is the leader of her local Charlotte R.O.C.K. group. Nikki’s group focuses on making the gluten-free lifestyle fun for celiac & gluten intolerant kids in her area. Nikki’s group meets 4-5 times a year having a “ROCK Party” for the kids, while the parents have an informational gluten-free meeting. 

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Determine the Primary Needs of your Local Group.
The first person I met in my area who wanted a local support group was the mom of a young daughter with celiac disease. Our group has singles, couples and families, but the more we’ve grown, the more I realized that in our particular area we had lots of kids who needed support. They needed to know they weren’t the only kids who struggled with food allergies and/or celiac disease. So for us, it was a good decision to join Danna Korn’s R.O.C.K. organization, which focuses on helping kids to have a positive and healthy attitude towards the gluten-free diet and lifestyle.

How Sarah decided to form her group: 
“It's more of a social group than a support group, which both have their place in our journeys. For me, I wanted to get people together and do what we would normally do, but with other people, just like us. A group that comes together for good food, friends and fun. I wanted to focus on what we CAN have and where we CAN eat, so I highlight local restaurants in and around Milwaukee that are willing to cater to us, and I'm proud to say that we have only doubled up on restaurant options a couple of times, and that was only because people enjoyed them so much that we had to go back.”

How Shirley started her group:
“A friend and I started my group and to be honest she was the “pusher” on getting our group rolling. That turned out to be a very good thing, as I kept thinking I couldn’t form the group unless I knew everything about celiac/non-celiac gluten sensitivity. I was wrong. There is nobody who starts or leads a group who knows everything. Obviously, I still don’t know everything, and members don’t expect me--or you--to know everything. When you don’t have an answer, you can seek it out. The most important thing that a gluten-free support group does is provide support. It’s a forum for sharing frustrations, successes, gluten-free food, and the latest information. Support groups are absolutely critical to those who are newly diagnosed as they immediately let “newbies” know that they are not alone, that they will survive and eventually even thrive as others are doing.”

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Be Flexible!
Find meeting times that work best for the majority of your group members. If possible, have different types of meetings that work for different members. As Sarah shares in a moment, you can’t please everybody... but you can have options. Our group meets bi-monthly for a Saturday afternoon meeting and that works for a number of our members. But for others, we also have an informal coffee break once a month (usually on a Tuesday evening) and that works great, especially for our members with busy schedules. Make sure to build an open network for communication with your group. This can be through Facebook, through an email listserv, or even by using a Yahoo group to share information.

Some advice from Nikki: 
“Determine how much time you have to devote to running a support group. If your time is limited, see if you can find someone/others who will share the responsibilities and shares your passion for helping others....Have fun with planning activities which can focus on the positives of being gluten-free or having celiac disease. Having fun allows us all to be normal without the stigmatization of being different.”

Sarah’s thoughts on being flexible:
“During one of our first dinners, I polled everyone to see what they wanted to see from our group, wasn't sure if I should go a more traditional route with a more support-group-like feel, but most folks felt they would like to just meet out for pizza and a beer and talk about how we make things work everyday in our GF lives. So we've stuck with that, and it works well for us.

It's important to remember that you can't always please everyone -- I do the best I can to accommodate our crowd and make the majority happy, and for the most part, they are so grateful. Some of my dearest friends are in the group now and I'm thankful that I decided to start this group and have kept it going each month for this long.”

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Spread the Word.
As a blogger, I knew when I started our support group that I wanted to have a website to promote our group. We started using a “Meetup” group, but that system was rather restrictive and outdated. Our group now primarily keeps in touch through a group email listserv and a very active Facebook page. We also have an improved website and blog to share documents, keep a group calendar, and to have a searchable web presence. I also make it a point to contact our local media outlets when we’re having large meetings to attract new members in our area.

Sarah shares how she uses social media and her blog to spread the word:
“I use Facebook as an easy way to communicate with our group, on my Celiac in the City page. Like I said, I like to focus on the positives -- getting together and sharing in our daily adventures, what works for us, which products are on the "must try" list, etc.

I contact companies each month to get samples of goodies for our group -- or sometimes they contact me to review items and I ask for enough to give out to the group, the more "reviews" the better right? ;)”

How Nikki connects with her group and partners with gluten-free companies:
“Set up an email group on Yahoo, Gmail, Meetup, or any other service which allows you to communicate with other members. Most people don't have time to attend every meeting and need reminder emails. Set up a blog or webpage through free services such as to start with. It is usually free and sends new members doing internet searches to your group to join the email conversations and gets them involved. This is also a great place to post meetings and also work with affiliates (web stores, Triumph Dining, etc) to help with fundraising (if that’s necessary within your group).

Contact manufacturers to provide samples at meetings. You are their direct market and most companies will provide them for your group to sample which helps costs in providing refreshments but also allows you to try before you buy.”

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Should You Join a National Group?
Many support groups are part of a national network or support group organization. Is this required for your group? No, absolutely not. The specific needs, people, and the goals and/or mission of your group will help you decide whether or not your members would benefit from being affiliated with a national network. For our group, it was most important to me to have a free group. I didn't want our members to have to worry about group fees or dues. I also wanted a group that was welcoming to both children and adults. It was very important to me for us to meet the needs of all age groups. Therefore in our situation R.O.C.K. was a great option for us to be both found through a national database, yet also remain as a free group. Other groups have unique needs & missions though, and may choose to either be a completely independent groups as Shirley’s group is or even be more of an informal “dining” group as Sarah’s group is.

Why Shirley’s group is an independent support group: 
“I wanted an independent group. This was a time when all levels of gluten issues were not recognized (e.g., gluten sensitivity) and I wanted our group to be welcoming to all who ate gluten-free or were even considering living gluten-free. (In fact, we often have gluten-full folks join us just to learn more and enjoy our gluten-free meals.) I wanted to be able to share the information that I felt was important without having to follow a national organization’s charter. Others might want to be part of a national organization so that they have those rules and additional support/guidance elsewhere. I also didn't want our members to have to pay dues. I didn’t want even a small membership fee to keep folks from attending and I didn’t want to have a treasurer or any officers. I wanted to keep our group as simple as possible. Over eight years later, after numerous meetings with wonderful gluten-free meals and fantastic speakers and programs, this approach has worked for us. I advise folks often on starting gluten-free support groups. It’s very important work and more rewarding than one can possibly imagine.”

Nikki’s tips on whether or not to join a national organization: 
 “Determine if you want a support group which has a national support network. Some of these require dues to be paid, some do not. Support groups that do not offer a non-profit tax ID are usually less costly to set up and have no dues which may give you freedom in planning meetings but you may also have to pay for your own non-profit status at some point. Find a place or places that will donate space for you to meet at no charge - Community Rooms in Churches, Health Food Stores, Restaurants, Coffee Shops, etc. Research other support groups on the internet and call their leaders to ask for advice - No sense in reinventing the wheel when they can support you with a little guidance.”

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Allow the Group to Change and Grow.
When I first began our group I was really concerned about making sure we met often to provide a lot of support for our community. However, after many months of lots of both formal and informal meetings, attendance started declining and I was becoming burned out as the group leader. After talking with our group members and with leaders of other gluten-free support groups, I decided we didn’t need to meet nearly as often. I learned that most people will be more willing to come to a support group meeting when it’s well thought out and planned instead of hastily put together on the fly to meet monthly deadlines. Quality was more important than quantity! 

Don’t be afraid to ask for help! Learn about the specific talents & gifts that other members in your group have. I love to host baking classes with new members of our group along with coordinating the group blog and Facebook pages. Another member of our group, Nancy, is a gifted hostess and shopper. Nancy hosts many of our group potlucks and also likes to take new members on shopping trips to teach them the best places to find gluten-free groceries in our area. My husband is great at making posters, creating artwork, and being the technical support for our meetings. Using the strengths of your members will help the “work” of the group to go more smoothly, be evenly shared, and will empower the people in your group to help others.

How Shirley’s group has changed through the past 8 years: 
“My group started out with only a handful of us gathering at a local health food store, sharing information, personal stories, homemade gluten-free treats, and some gluten-free products that the store offered. Now we meet at my home. Another support group might start out as a meet-up of a few folks at a restaurant with a gluten-free menu. Starting out small and simply is good; it removes a considerable amount of pressure and expectations for the leader and all in attendance. Later on, the group can evolve into something else if the participants like.

We started out with about six folks showing up and now have about 200 members on our email newsletter distribution, with about 30 members (and not always the same members) showing up at any given meeting. (More attend our special “public” meetings, like our annual open house.) Our group is a very manageable size where members know each other and are very comfortable with each other, but are quick to wholeheartedly welcome new members as well.... Remember There are also no wrong ways to lead a support group.”

Sarah shares different activities her group has enjoyed: 
“Some of the other things we've done: field trip to the GF Expo, holiday cookie exchange (2 years of success!) several food drives to get more GF options in our local food banks, a trip to Madison to try a new restaurant and the Silly Yak bakery. Big fun!”

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Lastly, no matter what you do with your group, no matter how big or small that it is, remember you will be providing a huge service to your community! Your time and energy will be an immeasurable blessing to the local gluten-free population. You don’t have to be a perfect planner or leader, all you need is a deep passion to help the gluten-free people where you live. 

Many, MANY thanks to Sarah, Shirley, and Nikki for sending me their best tips to share in this article!

If you have additional questions or need help starting a gluten-free support group, please feel free to email me, Carrie Forbes: gingerlemongirl at gmail dot com.

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  1. Thank you for this thorough list of tips! There is no local support group where I live, and these suggestions might just give me the courage to start one.

  2. I love that you shared this, Carrie. I have a feeling starting a free group locally may be in my future. :D Just because I don't like the existing one as I was in the email group, but was never able to attend the events. The members weren't supportive at all and more than once the leader was pretty unprofessional in her emails.

  3. Yay Sarah!!! I LOVE the Milwaukee GF group :-) I look forward to our dinners out every month!

  4. Carrie, you really did a beautiful job on this post! Thanks so much for including my input! :-) I hope that we will hear that tons of folks have been inspired to start support groups after reading this post. ;-)


  5. Fantastic post Carrie. I'm motivated to get something started now in my area!