CELIACTODAY

Whether in Burbank or Bangor, celiac support groups throughout the country wrestle with many of the same issues:

How often should we meet? Where? How much should we charge for membership? Which national group should we join? Should we publish a newsletter? How often?

A measure of their diversity is evident in the different ways the nation’s largest local support groups have answered those questions. The graphs below illustrate that variety.

The graphs are based on responses local support leaders gave when asked the same set of questions in telephone interviews conducted by CeliacToday.com.

We contacted more than two dozen local groups, and collated the responses from the 21 groups with the largest membership. We had planned to write about the “top 20,” but five groups were tied for the 20th spot, each with about 200 members.

How Often to Meet

The frequency of meetings varied widely, though most groups meet less than six times a year. Only a few try to meet monthly or almost monthly.

Many groups skip December meetings, and most do not meet during the summer months. “We had a meeting in summer, but there was not much interest,” said Tom Flynn, head of Atlanta Metro Celiacs, voicing a common experience.

When to Meet

Nearly two-thirds of the groups meet on weekends, with Saturday by far the most popular day of the week.

Among groups that meet on week nights, no particular day of the week was significantly more popular than any other. (One group even meets on Friday night, though its newly elected president said that was likely to change.)

Where to Meet

Finding a meeting place turns out to be challenging in several ways. One issue is locating a venue that will agree to host the group at a reasonable price.

Most groups wind up meeting in hospitals, which makes intuitive sense, given that celiac is a medical condition.

Churches are the second most-frequent meeting venues, followed by civic buildings (for example, libraries and community centers), colleges and “other” locations, such as fraternal lodges.

Another issue is finding a place that most members find convenient to reach.

Last year, for example, the CSA Denver Metro Chapter began rotating its bi-monthly member meetings among three different parts of the metro area. Previously, the meetings were held only in south Denver, which made it difficult for members in the northern parts of the sprawling metro area to attend.

Membership Fees

For most groups, the annual membership fee falls between $15 and $25 per family. Two groups charge as much as $35, and five groups do not charge any fee at all. (The latter tend to have informal structures, and not to publish newsletters.)

Group leaders say there is no “right” answer when setting the fee; it depends entirely on the group’s size and activities.

The Atlanta group, with about 200 members, covers its expenses fine with a $25 fee, said Mr. Flynn, the chapter’s leader.

However, the Detroit-based Tri-County Celiac Support Group, with about 700 members, finds it difficult to break even with its $25 fee without also holding fund-raising events, said Mary Guerriero, that group’s leader.

National Affiliation

None of the country’s three national support groups represents a majority of the top 21 local groups. This is true whether the measuring stick is the number of local groups or membership in the underlying local groups.

By far, however, the Celiac Sprue Association, Omaha, Neb., remains the largest of the three. Its share of the affiliations exactly equals the combined shares of the Celiac Disease Foundation, Studio City, Calif., and the Gluten Intolerance Group, Auburn, Wash.

Perhaps surprisingly, five of the 21 largest local groups—which is to say, about a quarter of them—have chosen to remain independent of any national organization. These are the groups in Detroit, Philadelphia, Washington, D.C., and Westchester, N.Y., and the Celiac Support Group at Children’s Hospital Boston.

Newsletter Schedule

Most of the support groups publish newsletters, which in many cases are central to the purpose and identity of the group.

“It we didn’t put that newsletter out, we might as well fold,” said Ruth Smith, head of the Celiac Sprue Association of Greater Chicago. “Because that’s what everyone wants.”

The most common publishing frequency is four to six times a year. For example, the Gluten-Free Gang of Central Ohio, based in Columbus, times its newsletters to reach members a few weeks before each of its four or five yearly member meetings.

Among the five groups without newsletters, a few have deliberately chosen not to publish them. A few groups would like to publish a newsletter but haven’t been able to find a volunteer to take on the responsibility.

“We have tried, but we have failed miserably,” said the leader of one East Coat group. That group sends its members short bits of information, including meeting announcements, by e-mail.

By and large, though, most group leaders continue to feel that printed newsletters are a much more effective way to communicate with members than e-mails or even electronic newsletters.

This story originally appeared in the (March, 2008 ) issue of CeliacToday.com. It was most recently updated in (April, 2008).