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. If they cannot, contact Food Allergy Research & Education (FARE) to find a support group.
What do you do, though, 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:
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 a job for one person. Ask your pediatrician or allergist for names of other local parents who have children with food allergies, and no doubt you’ll find someone willing to help. Keep in mind 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; but once the group gets going and you start delegating, your workload will decrease somewhat.
Will your group include members from a specific town, 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.
Hospitals are often excellent locations. They are centrally located and large rooms may be available to members of the community 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).
We recommend about five meetings a year – every other month of the school year, starting in September. (We chose 2-hour evening time slots the second Monday of the months of September, November, January, March, and May.) Our meetings have become less frequent, however, as our eNewsletter keeps people updated. We encourage participation in national food allergy walks, conferences, luncheons, galas, and more.
When you affiliate with a hospital, you lend medical credence to your support group; and ideally, you could meet at this hospital as well. 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 can recommend other allergy experts as speakers.
FARE has a list on its website of support groups throughout the United States. Let them know of your group, and they may be able to add it to their list. Many people turn to the internet as soon as they get a food allergy diagnosis, and they find FARE fairly quickly. If FARE knows of your group, it can refer people to you.
ORGANIZING THE FIRST MEETING
The first meeting ideally would have a pediatric allergist (your medical advisor) or other food allergy medical professional in attendance.
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. If you use social media, perhaps list on Facebook, Twitter, or Instagram for more visibility.
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, daycare centers, schools, and churches/synagogues. You may also want to consider creating a group on one of the social networking sites.
LEADING THE FIRST TWO-HOUR MEETING
Give each participant 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. You may want to 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 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. These can be used as topics for future speakers.
For the first fifteen minutes, participants chat and network. This allows them to get to know each other and share their common 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.
Introduce yourself, your co-leader, the purpose of the group, and the agenda for the meeting. Your introduction should include a disclaimer that the group is meant to give members support, rather than to 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.
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 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.
Allow about 30 minutes for a question-and-answer period after the formal presentation.
Reserve the final 15 minutes of the session for participants to ask specific questions of each other or of 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.
Announce the date of the next meeting and the name of the next speaker, if you know it. (It is important 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
name, address, phone, e-mail, etc.
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 who were 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.
Invite allergists, pediatricians, registered nurses, nutritionists, school principals or preschool/daycare directors, lawyers, social workers, psychologists, and/or special educators.
LONG-TERM FOLLOW-UP
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.
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.
Enlist participants to coordinate support group programs. Some of the MOCHA programs include:
You may want to do this once your group has been up and running for several years. You will need to 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!