HOW TO START A SUPPORT GROUP
Once your child has been diagnosed with a food allergy, your pediatrician, allergist, or doctor may be able to refer you to a local parent support group. You can find one by visiting MOCHA’s Education Page for Support Group search links from national food allergy organizations.
If you are inspired to start one yourself, a few organizations mentioned in the links above offer guidance on starting support groups. Many support groups are online, and several meet in person – offering a special type of support.
Wisdom from MOCHA Co-Founders Denise Bunning and Anne Thompson:
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 each found out about our children’s allergies. Here are the steps we recommend:
- PARTNER WITH A LIKE-MINDED PARENT
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.
However, running a support group is too daunting for one person. Ask your pediatrician or allergist to connect you with parents with children with food allergies, and you’ll undoubtedly find someone willing to help. Remember that the two of you will invest many hours organizing and researching things like finding a meeting place, booking speakers, coordinating medical advisors, and collecting a list of resources. Still, once the group gets going and you start delegating, your workload will decrease somewhat. - DEFINE YOUR REGION
Will your group include members from a specific town, county, or area? Remember that you can always include anyone who wishes to join, but most people won’t want to drive to meetings much more than an hour away. Try starting small and expanding as you get more comfortable with the needs and wants of your group. - FIND A MEETING PLACE
Hospitals are often excellent locations. They are centrally located, and large rooms may be available to community members at no charge. Libraries or other community centers 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). - SET A MEETING SCHEDULE
We recommend about five meetings yearly – every other month of the school year, starting in September. (We chose 2-hour evening time slots on the second Monday of September, November, January, March, and May.) However, our meetings have become less frequent as our eNewsletter keeps people updated. We encourage participation in national food allergy walks, conferences, luncheons, galas, and more. - AFFILIATE WITH A PROMINENT AREA HOSPITAL AND WELL-KNOWN LOCAL ALLERGIST
When you affiliate with a hospital, you lend medical credence to your support group; ideally, you could also meet at this hospital. Connecting to a well-known local allergist will also benefit your group. The allergist can refer new clients to the group when a food allergy diagnosis is made, provide medical advice and wisdom, and recommend other allergy experts as speakers. - JOIN FOOD ALLERGY RESEARCH & EDUCATION (FARE) or one of the other national food allergy organizations.
FARE has a list of support groups throughout the United States on its website. Let them know of your group, and they may be able to add it to their list. Many people turn to the internet when they get a food allergy diagnosis and find FARE reasonably quickly. If FARE knows of your group, it can refer people to you. Also, consider becoming a FARE Recognized Support Group. - CONSIDER BECOMING A FOOD ALLERGY AND ANAPHYLAXIS CONNECTION TEAM (FAACT) recognized support group. Visit FAACT’s Support Group Page for details, including FAACT’s Annual Leadership Summit.
- CONSIDER AFFILIATING WITH THE ASTHMA AND ALLERGY FOUNDATION OF AMERICA
This organization accepts affiliations, offers information about local and international groups, and guides on starting a support group. Since food allergies are closely related to asthma, this is a good organization with which to be associated.
ORGANIZING THE FIRST MEETING
- SCHEDULE A SPEAKER
The first meeting ideally would have a pediatric allergist (your medical advisor) or other food allergy medical professional in attendance. - CREATE A FLYER AND/OR EMAIL
Be sure to include all the pertinent information: what your group is, who should attend (parents of children with food allergies), why it’s vital that they attend, the day, date, and time of the meeting, and the meeting location. If you use social media, perhaps list on Facebook, Twitter, or Instagram for more visibility. - POST FLYERS IN PUBLIC PLACES IN YOUR TARGETED SUPPORT GROUP AREA
Try to visit as many local offices of pediatricians and allergists as you can find. Have your doctors refer you to others. Post flyers at local hospitals, libraries, park districts, community centers, preschools, daycare centers, schools, and churches/synagogues. Consider creating a group on one of the social networking sites.
LEADING THE FIRST TWO-HOUR MEETING
- WELCOME
Give each participant a name tag and register their names, phone numbers, and e-mail addresses. Let them know they can join the organization immediately or wait until they can participate long-term. Consider charging dues ($20-25/year) to cover operating expenses (support group leaders are unpaid volunteers) and to cover the cost of the occasional non-volunteer speaker. Collect dues once a year. Most speakers will volunteer their time, but you must 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, and camp, finding the right medical professionals, providing adequate nutrition, living with allergies (birthday parties, social events, traveling, etc.), and legal rights. These can be used as topics for future speakers. - PRE-MEETING MIX AND MINGLE
For the first fifteen minutes, participants chat and network. This allows them to get to know each other and share familiar stories. Have a table of reference materials such as brochures, food allergy-related articles, cookbooks, copies of FARE publications, and school/daycare books. Indicate which items are free and can be taken and which are “reference only” and/or to be ordered. - START
Introduce yourself, your co-leader, the group’s purpose, and the meeting’s agenda. Your introduction should include a disclaimer that the group is meant to support members rather than provide specific medical advice. Be very clear about this. It will help you avoid legal problems that might crop up if a participant acted on “advice” they received at the support group and had a bad result. - SPEAKER
Introduce your speaker, including his or her credentials. Ask the meeting participants to hold their questions until the end of the session. If the speaker agrees to permit questions during the presentation, encourage participants to ask questions of a general nature rather than specifics related to their 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 these specific questions can often lead the discussion hopelessly off track. As the leader/moderator, it is your job to keep the discussion on track and allow the speaker to finish his/her presentation. - Q and A
Allow about 30 minutes for a question-and-answer period after the formal presentation. - NETWORKING AND DISCUSSION
Reserve the final 15 minutes of the session for participants to ask specific questions of each other or the speaker. You may also want to consider scheduling a time within the meeting outside of the speaker’s talk for participants to share their specific issues or concerns. This might help keep the speaker portion of the discussion on track. - CONCLUSION
Announce the date of the next meeting and the name of the next speaker, if you know it. (It is essential to understand the needs and expectations of the group members and invite speakers who will address those needs and expectations.) Ask for volunteers who would like to work with leaders on organizing various tasks for the next meeting. Thank everyone for coming and adjourn.
IMMEDIATE FOLLOW-UP TO THE FIRST MEETING
- COMPILE A ROSTER OF PARTICIPANTS
name, address, phone, e-mail, etc. - MEETING FOLLOW-UP
Send a thank you email to your speaker and get permission to post a .pdf of his or her presentation on your website for those unable to attend the meeting. Send a recap of the meeting highlights to your email list and direct people to your website to view the presentation if they did not attend the meeting. Eventually, you may want to create a newsletter to send following each meeting. - SCHEDULE THE SPEAKER FOR THE NEXT MEETING
Invite allergists, pediatricians, registered nurses, nutritionists, school principals or preschool/daycare directors, lawyers, social workers, psychologists, and/or special educators.
LONG-TERM FOLLOW-UP
- CREATE A WEBSITE AND A MORE PROFESSIONAL BROCHURE
that you can leave in doctors’ offices.
Be sure to include 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 support group materials we create 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. - BEGIN TO COLLECT RESOURCES FOR THE SUPPORT GROUP
Order books and other materials from FARE 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. - START TO DELEGATE!
Enlist participants to coordinate support group programs. Some of the MOCHA programs include:
- An every-other-month (or occasional) “cheat and eat” dinner. This smaller, more intimate group 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!
- Copies of emails members have sent to school principals, 504 school plans that have been implemented, etc.
- Recipes. Collect allergy-oriented recipes and compile a book.
- Events for the entire support group with or without the children. We have coordinated trips to parks or zoos and professional sporting events. You can ask for peanut-free sections when you have enough people coming!
- CONSIDER APPLYING FOR NONPROFIT STATUS
You can do this once your group has been running for several years. You must consult a lawyer and an accountant to see if you qualify for non-profit status and 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).
If, after reading this document, you have further questions or other ideas that could be included, please email Denise Bunning (Denise@MOCHAllergies.org). Good luck!
