HOW TO START A FOOD ALLERGY SUPPORT GROUP

Created by Denise Bunning, co-founder of the Chicago-area support group MOCHA (Mothers of Children Having Allergies) 10/2003

Where do you turn when you’ve just learned that your child has been diagnosed with a life-threatening food allergy? Hopefully, you can turn to a local support group for parents of children with food allergies. Your pediatrician, allergist, or doctor may be able to refer you; if not, contact the Food Allergy and Anaphylaxis Network (FAAN) at 800-929-4040 or www.foodallergy.org.

What do you do if there is no local support group? Start your own! That’s what my friend, Anne Thompson, and I did back in 1997 when we both found out about our children’s allergies.

Here are the steps we recommend for starting a group of your own.

INITIAL STEPS

1. Find someone you can work with to be your partner.

Running a support group is too big a job to do it alone. Ask your pediatrician or allergist for names of other local moms or parents who have children with food allergies. One of these individuals will most likely be willing to help. Keep in mind that the two of you will put in a lot of time getting things organized and researched (meeting place, speakers, medical advisors, etc.), but once the group gets going and you start delegating, your work will decrease somewhat. Starting a support group is a commitment. It takes organization, time and enthusiasm to keep the group going, but it is a worthwhile and rewarding adventure.

2. Define your support group area.

Will your group include members from a specific town, a county, or an entire area? Keep in mind that you can always include anyone who wishes to join, but most people won’t want to drive to meetings that are much more than an hour away. Try starting small and expand as you get more comfortable with the needs and wants of your group.

3. Find a meeting location.

A hospital is a good location to meet, often the rooms are available at no charge and it is easy to find. A library or other community center work well too. We don’t recommend meeting in someone’s home. You want to keep the focus on the meeting topics and less on the social aspects (although these are important, too.)

4. Define your meeting schedule.

We recommend about five meetings a year–every other month of the school year, starting in September. (We chose the second Monday of the months of September, November, January, March, and May.)

5. Affiliate with a prominent area hospital and a prominent local allergist.

By having a hospital affiliation, you lend medical credence to your support group and ideally, you could meet at this hospital as well. By affiliating with a prominent local allergist, you also lend medical credence to your support group and receive other benefits as well. The allergist will know of your group, so he or she will refer new clients to the group when a food allergy diagnosis is made. Also, the allergist can provide medical advice and wisdom and can recommend other allergy experts as speakers.

6. Join the Food Allergy and Anaphylaxis Network (FAAN) (800-929-4040 or www.foodallergy.org).

FAAN does not accept affiliations of local support groups, but if you let the organization know that your support group exists, it will do its best to refer people to you who ask for local support groups. Many people turn to the Web as soon as they get a food allergy diagnosis, and they find FAAN fairly quickly. If FAAN knows of your group, it can refer people to you.

7. Consider affiliating with the Asthma and Allergy Foundation of America.
(800-7-ASTHMA or www.aafa.org).

This organization does accept affiliations. Since food allergies are so closely related to asthma, this is a good organization with which to be associated.

ORGANIZING THE FIRST MEETING

1. Schedule a speaker for your first meeting.

The first meeting ideally would have a pediatric allergist (your medical advisor) or other food allergy medical professional in attendance.

2. Create a flyer to announce your group?s first meeting.

Be sure to include all the pertinent information: what your group is, who should attend (parents of children with food allergies), why it’s important that they attend, day, date, and time of the meeting, and meeting location.

3. Post flyers all over your targeted support group area.

Try to visit as many local offices of pediatricians and allergists as you can find. Have your own doctors refer you to others. Post flyers at local hospitals, libraries, park districts, community centers, preschools, daycares, schools, and churches/synagogues.

LEADING THE FIRST MEETING
(2 hours is a good amount of time to allocate for your meeting.)

1. When participants arrive:

Give each a name tag and register their names, addresses, phone numbers, and e-mail addresses. Let them know that they can join the organization immediately or wait until they’re ready to participate long term. If someone joins, ask them to pay annual dues of between $15 and $20. Collect dues once a year. Dues should be paid to cover your operating expenses. It should not be used to pay yourself or helpers. Most speakers will volunteer their time, but you will need to reserve a small fund for the terrific speaker who will not comp their time.

Have participants fill out a short form that asks about their primary concerns regarding their child’s food allergies. Some topics include food safety issues at home, daycare, school, camp, finding the right medical professionals, providing adequate nutrition, living with allergies (birthday parties, social events, traveling, etc.), and legal rights. Use your groups ideas for future speakers.

2. Warm-up time

Let participants talk to each other and network for about the first 15 minutes of the session. This allows them to get to know each other and share their common stories. Have a table of references with brochures, related articles, cookbooks, copies of FAAN books, and school/daycare books. Have signs indicating what items they can take and what they can peruse through or order.

3. Introduction

Introduce yourself and your co-leader. Let participants know what the group will be about. Tell them that the support group is not intended to provide specific medical advice. If you are not clear about this “disclaimer,” you could have legal problems if a participant acts on “advice” they receive at the support group and has a bad result.

Give participants an overview of the format of the meeting.

4. Speaker

Introduce your speaker. Be sure to include his or her credentials. Ask the meeting participants to hold their questions until the end of the session. If you would like to permit questions during the speaker’s presentation (ask the speaker first if this is okay), encourage participants to limit their questions to those of a general nature, rather than specifics related to their own child.

Most people usually ask specific questions about their own child’s situation. In some cases this can be helpful to others in the group, but many times these specific questions can lead the discussion hopelessly off track. It is your job as the leader/moderator to keep the discussion on track and allow the speaker to finish his/her presentation.

5. Questions and Answers

Allow about 30 minutes for a question-and-answer session after the speaker.

6. Networking/Discussion Time

Reserve the final 15 minutes of the session for “free” networking and discussion time. This is the time for participants to ask specific questions of each other or the speaker.

You may also want to consider planning time into the meeting for participants to share their specific issues or concerns. This time would be separate from the speaker and might help keep the speaker portion of the discussion on track.

7. Ending the Meeting

Wrap up the meeting and let participants know when the next meeting will be, and who the next speaker will be, if you know. It is important to understand the needs and expectations of the others who are interested in the group. To be successful you will need to make sure your effort addresses your members needs and expectations.

AFTER THE FIRST MEETING

1. Compile a roster of participants (name, address, phone, e-mail, etc.)

2. Mail a follow-up form letter to the participants thanking them for coming. Include minutes or a summary of the first meeting, including the main points or handouts from the speaker. Include a phone/email list to encourage friendships and support in the mailing as well as copies of any pertinent news articles you have come across regarding food allergies, etc. (You may need to get permission to copy some of the articles, be careful.) Eventually you may want to create a newsletter to mail following each meeting.

3. Schedule the speaker for the next meeting. Speaker ideas include allergists and pediatricians, registered nurses, nutritionists, school principals or preschool/daycare directors, lawyers, social workers, psychologists, and special educators.

LONG-TERM

1. Create a Web site and a more professional brochure that you can leave in doctors’ offices.

Be sure to have a legal statement letting people know you are not offering medical advice. The MOCHA statement reads:

MOCHA is not a professional or medical organization. It is a group of parents sharing information and supporting each other. The discussions, meeting minutes, handouts, speakers, agendas, and other products of our support group do not constitute medical and/or legal advice and should not be relied upon as such. Always discuss individual health questions and medical issues with a qualified personal physician.

2. Begin to collect resources for the support group.

Order books and other materials from FAAN to display at the meetings, so others know what resources are available. These can become your support group “library”–participants can check them out at meetings and order their own.

3. Start to delegate! Enlist participants to coordinate support group programs. Some of the MOCHA programs include:

• An every-other-month “cheat and eat” dinner. This is a smaller, more intimate group that gets together at local restaurants just to share mom stories. It’s a chance to eat out without the kids– and to eat all those forbidden foods!
• A “school resource book.” The MOCHA book includes copies of letters members have sent to school principals, school plans that have been put into action, etc. This book shows participants how other parents have managed their child’s allergies at school.
• Recipes. Collect allergy-oriented recipes (many can be found through FAAN), and compile a book.
• Events for the entire support group with or without the children. We have coordinated trips to parks or zoos as well as to professional sporting events. You can ask for peanut-free sections when you have enough people coming!

4. Consider applying for nonprofit status.

You may want to do this once your group has been up and running for several years. You first will need to contact a lawyer to fill out the appropriate forms. Ask if they are willing to do this “pro bono” (donating their time so you don’t have to pay).

5. If after reading this document you have further questions, please email me with them or other ideas that I could include. (dbunning@comcast.net)

6. Good Luck!