Food Allergy Resources

Starting a Food Allergy Support Group

October 2005

If at all possible, join or start a local support group for parents of children with severe food allergies. Caring for a child with life-threatening food allergies is very difficult. A support group can provide emotional support from other parents who are facing similar challenges, and provides a forum for sharing resources, ideas and experiences. It is truly wonderful to be able to meet face-to-face with other parents who really "get it".

How To Get a Group Started

Arrange for a Meeting Room. Make arrangements for a room in which to hold your group's meetings. A local community center room or meeting room in a local restaurant is ideal. Many hospitals have meeting rooms that are available as well. It is best to avoid meeting in members' homes, so that the meeting is not affected by that person's availability.

You will probably want to plan to hold your meetings without the children, so that the members will be able to speak freely. Your children should not hear you complain about how difficult it is to care for them, and they may be frightened by some of the subjects that are discussed (such as accounts of other children's anaphylactic episodes).

Advertise Your New Group. Create a simple flyer with a brief description of your group and information about your first meeting.

Talk to everyone you can think of who might know of other area parents of food-allergic children. Don't forget to call local:

• Allergists


• Pediatricians


• School Nurses


• Mothers' Groups


• Daycare Centers


• La Leche League Chapters


• Hospitals


• Churches and Synagogues

Ask all of the above contacts to help you distribute and/or post your flyer.

Post a notice on the "Geographic - Local Support" forum here at Kids With Food Allergies announcing the formation of your new group. Add your support group to KFA's list of local support groups. Contact websites that list local food allergy support groups and ask to be added to their lists as well.

Spread the news through word of mouth; network with friends, neighbors, acquaintances. There are bound to be others in your area who would be interested in joining. Your job is to find them!

Even if only one guest shows up for your first meeting, don't despair. A support group of two is much better than no support group at all. Once you get started your group is bound to grow.

Plan Your Group's First Meeting. At your first meeting you should:

• Have each person fill out a name tag and sign a sign-in sheet upon arrival. Be sure to obtain detailed contact information (including name, address, phone number, e-mail address, and children's names, ages and allergies) for each person present.


• Have each person introduce herself and tell about her child's allergies.


• Discuss the purpose and goals of the group.


• Determine who will be the group's leader; this person will lead meetings and be the group's contact person.


• Divide responsibilities and encourage active involvement. People will be more supportive of an organization which they help create. Have others suggest topics and speakers, take responsibility for member communications, do research, offer sample recipes or products, and bring up issues.


• Discuss how the members want to structure the meetings: free form vs. formal vs. something in between. Some groups are very informal and focus on free-form discussions of allergy-related issues and questions raised by individual members; other groups regularly feature guest speakers (such as doctors, nutritionists, psychologists, chefs and school nurses) at their meetings. Many groups plan topics for each meeting.


• Your group may choose to devote its energies to outreach efforts such as fund raising or legislative advocacy.


• Set up a method for communicating with each other, such as distribution of the group's roster and creation of an e-mail distribution list.


• Set up a time and place for the next meeting. If possible, set a 6- or 12-month meeting calendar.

Support Group Social Events

Support group family social events are a great opportunity for your child to meet other children with food allergies. Children like to see that they are not alone, that there is a whole group of children in their area who also must be careful about what they eat, carry medication, and wear MedicAlert® bracelets!

Family Parties. Imagine taking your child to the buffet table at a party and telling him that all of the food is "safe" and he can eat whatever he wants. And then imagine letting your child wander off on his own at that same party, with you only supervising him to the same degree that most parents keep an eye on their children at a party... no trailing along right next to him, no worrying about what his playmates are eating or what he's touching. With the help of your support group, you can make this fantasy come true.

Your support group can create family parties at which every child in attendance can eat every food item served. Here's how:
In order to ensure that the party menu takes all of the attendees' needs into account, have a policy requiring that those who wish to attend the party either attend the party-planning meeting or RSVP (with a complete list of their family's allergens) prior to this meeting.

At the planning meeting, start by determining the general menu "ground rules" based on the common allergies that you're dealing with (such as no dairy, egg, nut, wheat, or citrus fruits). Then brainstorm food ideas, with each party attendee having veto power over any food idea that is put forth.

If your support group is particularly large you may want to create several parties. For example, you can split the group up by allergens or by the children's ages.

Of course, don't forget to plan non-food activities, too. Ideas include:

• Arts and crafts


• Party games


• Relay races


• Carnival-type games (such as a bean bag toss)


• Holiday-themed activities (such as a Halloween Costume Parade)


• For older kids, try a "food allergy quiz game" where the kids and the parents square off to test their food allergy knowledge.


• Filling goody bags with non-food treats (such as pencils, small plastic toys, etc.)

Other Family Activity Ideas. Ideas for family activities include parties and picnics, children's play groups, bowling or miniature golf outings, family camping trips, fund raising events, and babysitting co-ops. Be sure to include siblings, too.

Baked Goods Exchanges. Another popular event that your support group might want to consider is a Baked Goods Exchange. For this parents only meeting, each member bakes up a large batch of something that is safe for their child and that meets the events basic ground rules (for example, you might want to agree in advance that everything will be nut-free). The member comes to the meeting with a tray of individually wrapped baked goods, a "tasting tray" of the item made, copies of the recipe, and information about all of the ingredients.

At the meeting each attendee distributes her recipe, describes in detail exactly what is in the dish (i.e., the ingredients of the margarine, the sprinkles, etc.), and passes the tasting tray. Everyone has a great time sampling each item, and then each member fills a bakery box with a few of each treat that is safe for her children. Because kids with food allergies usually cannot eat things from bakeries, dessert buffets, and so forth, this is a fabulous opportunity for them to get the thrill of enjoying a whole assortment of baked goods at once.



Copyright (c) 2005, Linda Marienhoff Coss, all rights reserved. This article was written based on information found in the Food Allergy Support Groups chapter of "How To Manage Your Child's Life-Threatening Food Allergies: Practical Tips For Everyday Life."
More information about this book can be found at KFA's Allergy Book Shop.

Reviewed by KFA Medical Advisory Team August 2005