Friday, January 8, 2016

Starting your own Celiac or Gluten Intolerance Support Group - Part I

Find your passion
So you think you want to start a Support Group. Well you’ll need to find your passion for the task first. If you can’t do something like this with love and determination then you might as well give up now and allow someone else to take over. Better still hunt around a bit and drive the distance to join another group or locate one online. Starting a Support Group is no easy task…it will take hours of effort on your part just to get things started. Once you’ve got it started it will take on a life of its own and you can sit back and relax a bit. But you’ve got to be passionate about what you want to accomplish - then just jump in with both feet and get things moving.
Find a location
Location, location, location…yes, it is that important. More important is it has to be free. So you want a spot that’s easy to get to, has plenty of parking, and allows for handicapped access…and it has to be free. It’s my understanding that in the US at least most Community Facilities are obligated to give back to the Communities that support them; which often translates into free space…and sometimes into free coffee/tea too. Don’t be ashamed to ask for more…you might just be surprised at what you receive. Our Support Group has been getting free space, free coffee/tea/juice AND free GF lunch for over 3 years now.
Be consistent
Before you start making all those phone calls, or sending out all those emails…think about when you want your meetings. Since it’s only you right now, just go ahead and be selfish and pick a few days and times that work best for you. But you must be consistent. People tend to look for the patterns in their life…they like things they can count on to be there when they expect them. So choose a date and time that works for you this month, every month, ad infinitum. Now once you start making those phone calls and sending those emails you may need to be a bit flexible…but you get the idea and you at least have a starting point. First Tuesday of every month at 7:pm or the second Saturday of every month at 10:am pick a few that work for you and keep those in mind when negotiating for your space. And don’t forget that most meetings run about an hour and a half to two hours long.
Getting started
So now it’s time to get started and find that location. Don’t go racing around like a spider in the rain...use the phone…use the computer. Set up a Gmail account specifically for your Support Group. Start contacting Hospitals, Community Centers, Libraries, you name it. Any Facility that might have meeting rooms and is supported by the Community is eligible. Even large Attorney’s offices, Doctors’ offices, Medical buildings, Senior Housing complexes or Hotels are places to call. Ask right up front if they have any free space available for your monthly Support Group Meeting. Don’t be disappointed by the No’s…respond politely and move on to the next one. Ask the No’s if they can recommend a place that would have some free meeting space. When they ask tell them you need free space for a Support Group for people living and coping with Celiac Disease and Gluten Intolerance. Don’t be shy…get the word started…you never know who you’re talking to and who might be looking for your Support Group in the future.
The space
What you’ll want is a meeting room that can handle at least 25 people…perhaps more. Our group is very small…about 12-24 people…but there’s a group just north of us that has 40-50 people every month, and one further south that can number in the hundreds. You’ll want a room that provides chairs…tables are nice…but chairs are important! Some may want you to setup and cleanup yourself for each meeting. That means you’re on your own for the first few meetings. Don’t be afraid to put people to work when they start showing up for your meetings. People love to be needed…and you’ll be needing them to help setup and cleanup or you’ll be stuck doing it all by yourself and it won’t be long before you resent that. Ask if the facility can provide coffee/tea or if they have vending machines that your members have access to. Ask about bathrooms. If they keep their bathrooms under lock and key it may not be the ideal place for your meeting. Ask if it’s ok to bring food in…you may want to do the occasional pot luck or bring in samples for people to try out. If you can do it…go and visit the space before you commit to it. It’s not going to do you any good if it’s in the middle of a construction zone, or near an area that’s loud and busy, or even hidden deep down in the bowels of an ancient building. Once you’ve found what you want…give them your dates for at least 6 months – preferably 12 months – and ask them to make certain your group is placed on their calendar.
Tell the world
So now you’ve got your free space and you’re on the calendar…it’s time to get the word out. Hopefully, while you’ve been getting all the work done…you’ve been telling anyone who would listen what you’re planning to do. And I mean everyone! Anyone who would stand still for five minutes and listen…your Doctor, your friends, your family, the mailman, the taxi driver…you never know who will need you in the future. Remember that Gmail address you set up…that’s going to be your main form of contact for a while. Be cautious about passing out your personal phone number. Use the email address as often as possible. I actually have two emails…the first is my spam filter…it gets used on EVERYTHING…even my business cards (I’ll get into that later). I check that email daily and anything that comes through that I want to read or answer I forward it over to my second address and then handle it from there. Set up a Facebook account with your Gmail address. Post your meeting location and dates everywhere. Do a search for others in your area that might be looking for Support Groups. Poke around on Google for any online groups or calendars that might be willing to carry your meeting information. There are tons of ways to advertise your Support Group for free…hunt them down and use them well.
Now that you have the first building blocks in place it's time for the most important up for your first meeting!!  Be there at least 30 minutes early...bring a friend along just in case no-one else shows up...and stay for the meeting.  First month, every month for at least three months.  If you're getting the word out...they will begin showing up.  If you build it...they will come.  Don't get discouraged.  Keep trying.  If after three months you're still sitting in the meeting room alone...well, then you may want to consider it wasn't the right time to do it.  You can consider trying a bit harder to get the word out...or release your reservation on the hall and go home.  But I really don't think you'll be doing that.  I honestly think that in three months you'll be needing to read Starting your own Celiac or Gluten Intolerance Support Group part II...good luck!!
Carolanne Le Blanc
Meeting:  4th Saturday of every month except December
Imperial Palms, East Clubhouse, 101 Imperial Palm Drive, Largo, Florida 33771

1 comment:

  1. Excellent post Carolanne. Thank you so much for taking the time to share your knowledge. I've just shared with my FB visitors, hoping some (even 1) will be inspired by your post to start a support group! Thank you for all you do for the celiac community in Florida, and beyond!