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Oct/Nov 2012 Issue
Strength in Numbers
Andria Youngberg desperately needed someone to talk to. The young mother from Cary, North Carolina, was raising a toddler who had multiple food allergies and she felt very much alone.
Youngberg’s son Tyler was allergic to peanuts, milk, eggs, soy, peas and beans and she was unsure how to best manage his many allergies. When arranging playdates for Tyler, Youngberg asked the other mothers not to serve peanuts and to have their kids wash their hands before they played with Tyler. But she was never certain how well her requests were received. Would Tyler be safe?
“It was overwhelming. I felt like I was out there alone learning what to do,” Youngberg says. “Tyler is such an incredible child, who just happens to have severe food allergies. I felt adamant that he should live a full, normal life, that he would not be limited or excluded because of his food allergies. I wanted to connect with other food-allergic families facing similar challenges. I needed to hear their stories and insights and I wanted to share mine.”
When she joined a small playgroup of moms who also had children with food allergies, Youngberg finally found friends who truly understood her struggles, and Tyler and his brothers could play with the other kids without worrying about what was being touched or eaten.
The moms soon realized that other food-allergic families could benefit from a similar group situation. So in 2003, they created NC FACES (Food Allergic Children Excelling Safely) to give support, information and fun to families living with food allergies.
Whether providing valuable resources, opportunities for kids to socialize or an avenue for advocacy, support groups help families successfully navigate life with food allergies. Groups might organize social events for food-allergic children, such as holiday parties where kids can play without fear. Or they might offer epinephrine training or invite a local allergist to discuss the latest research.
Managing food allergies can be overwhelming and isolating. But banding together with others in a similar situation can help battle the initial loneliness of facing a huge challenge alone. If a support group doesn’t exist in your area, start your own, say parents who have taken similar steps.
Nona Narvaez of St. Paul, Minnesota, felt isolated when her 14-month-old son Max had an anaphylactic reaction to eggs. Soon after that episode, he was diagnosed with severe allergies to milk, eggs, peanuts, tree nuts, sunflowers, peas, beef and pork. Suddenly, her son was left out of playdates because of other parents’ fears.
Narvaez’s search for a support group in the St. Paul area was futile. So she created her own, the Anaphylaxis and Food Allergy Association of Minnesota (AFAA). In 2001, she held her first meeting with four parents in attendance. Today, the group has more than 4,000 members statewide, with a mission to educate, advocate and support those with life-threatening food allergies.
A similar personal experience led to the creation of MOCHA (Mothers of Children Having Allergies), a Chicago-area parent-run support group. Denise Bunning was learning to navigate life-threatening food allergies for her two young sons in 1997 when she met Anne Thompson, another mother of a food-allergic child.
“My son’s diagnosis rocked my life. Fears and unanswered questions brought tears to my eyes and sent me scrambling for answers and support,” Thompson says.
The two moms created MOCHA to help other parents experiencing similar emotions.
“I was hoping that other families wouldn’t feel so alone and that, together, we all would educate and help each other,” Bunning says.
Support groups like these sponsor safe events for kids—whether through sports activities or the annual Food Allergy & Anaphylaxis Network (FAAN) Walk for Food Allergy.
Peanut-free sections for baseball games are a big hit in Minnesota. AFAA has partnered with the Minnesota Twins to provide peanut-free sections at several games each season. The event is well received. This year, the Twins offered 600 tickets, which quickly sold out. The group also works with the Minnesota Timberwolves to provide food-free suites for food-allergic basketball fans.
“Both these teams provide an awesome, safe experience for food-allergic fans and their families,” Narvaez says. “And they demonstrate to other teams across the country that it can be done elsewhere.”
NC FACES has worked with the local minor league baseball team, the Durham Bulls, to provide a peanut-free section at one or two baseball games a year. It also hosts food-free festivities for holidays, such as Halloween and Easter, removing the traditional focus on candy and treats.
“Baseball games, special movie showings, food-free Easter egg hunts, Halloween fun—we’re always looking for safe avenues to have fun with the children,” Youngberg says.
The groups also take on an advocacy role, standing up for children with food allergies.
AFAA has been instrumental in changing legal policy in Minnesota. For example, the group led efforts to pass a law in 2002 requiring all Minnesota ambulances to carry epinephrine. At the time, only two out of five ambulances were required to carry the life-saving medication. The group also raises awareness about food allergies through booths at the Minnesota State Fair and at its annual food allergy conference and expo.
“We hope that AFAA of Minnesota is a model of how to create policies and public understanding throughout the country,” Narvaez says.
In Illinois, MOCHA encourages members to take action: writing to lawmakers about policy matters, advocating for more research money and joining scientific studies to help find a cure for food allergies. MOCHA members helped pass an Illinois law requiring the development and implementation of guidelines for managing food allergies in schools statewide.
To search for a support group in your community, start by contacting national organizations like the Food Allergy & Anaphylaxis Network or the Gluten Intolerance Group. FAAN maintains an online state-by-state listing of food allergy support groups, which operate independently from FAAN. GIG posts a listing of its branches across the country. Online sites, like AllergyMoms.com, also feature lists of support groups.
If a support group doesn’t exist in your area or you wish there were one closer to your town, then it may be time to take the initiative to start your own group.
After Gina Clowes’ son was diagnosed with multiple allergies, she started a local support group, volunteered with national non-profit organizations and founded AllergyMoms.com in 2006. Clowes says she understands the vital need for support, recalling her joy at finding other moms like her.
“There are still many people out there who do not ‘get’ or even believe that an innocent food could cause a serious or fatal reaction. It can be exhausting to constantly explain or ‘prove your case’ to disbelieving relatives and friends,” she says. “So when you walk into a room with those who will cry with you, laugh with you and who totally understand that a lowly sesame seed can be deadly, you sink back into that support and it’s heaven!”
Clowes recommends that leaders focus the group’s mission by addressing the 5 W’s—who, what, when, where and why—before establishing a group.
1. Who will participate? Will the group be for parents only or will it be a place where kids can socialize?
2. What will be the focus of the meetings or events? Will there be guest speakers?
Will there be activities? Will there be time for open discussion?
3. When will the group meet? Will it meet monthly or bi-monthly? In the afternoon or in the evening?
4. Where will meetings be? Will meetings be in one fixed location or will meeting places vary? Will meetings involve food?
5. Why should new members join? What will entice new members to become involved in the group on a long-term basis?
You don’t have to do it alone, Youngberg stresses. Often, it’s easiest to start a group with friends in the same situation so that you can discuss ideas with each other.
“Do it with a friend or two and make it fun. It makes a huge difference to have someone to bat ideas off of or to help organize meetings and events,” she says. “A support group can take some time and effort but you can just start simple and see where it goes.”
At MOCHA, Thompson says she and Bunning are a complementary duo who regularly draw upon each other’s skills.
“I’ve been so blessed to have found an amazing co-leader. Denise’s skills complement my own, allowing us each to take on different roles. She is an outgoing, energetic and charismatic spokesperson, whereas I am quieter and enjoy working behind the scenes,” Thompson says. “There are things we’ve helped each other through that never would have turned out so well without the other person’s help and support.”
Once leaders decide on the group’s format and mission and set a location and date for the first meeting, it’s time to find other families to join the group.
Create a flier announcing the group’s first meeting and post it in public places, such as doctors’ offices, schools, libraries and parks, suggests MOCHA’s Bunning. It’s a good idea to invite a local allergist or someone with related expertise to speak at the meeting.
“New groups seem to struggle with getting people to attend. If you secure a speaker who has broad appeal and send out meeting notices in advance, a greater number of people will attend,” says Bunning, who shares tips for starting a support group on the MOCHA website.
Publicity is essential, says Jodi Stokes, coordinator of Parents of Allergic Kids (PAK), a support group in Charlotte, North Carolina. When PAK made the jump from a few moms meeting over coffee to a full-fledged food allergy support group in 2006, leaders publicized news of their group and its first meeting through articles in local newspapers. They also enlisted the support of local allergists, who were happy to promote the group to their patients.
Most groups use the Internet in some capacity. E-mail, newsletters, message boards and links to valuable resources often play a role in promoting the group and answering members’ needs.
“Starting a local message board has been a great resource. It gives members the opportunity to ask questions of other members and a place to vent,” Stokes says. PAK also sends out monthly newsletters. “Our members say that they appreciate us keeping them informed about the latest allergy research, local meetings and playgroups,” she adds.
Meetings provide a way for support groups to touch base regularly and to invite special guests to focus on specific topics, from the latest scientific studies to cooking demonstrations. Sometimes, parents meet just to share their experiences.
“We try to mix up our meeting topics. Guest speaker meetings are important but it’s equally important to do chitchat-style meetings,” Stokes says.
MOCHA’s Thompson says that a support group has a responsibility to pass on “as much good information as possible,” adding that it is important to screen for misinformation.
Bunning agrees: “Local support groups can help their members by providing educational links to national organizations, online newsletters, allergy magazines and allergy-friendly companies and restaurants.”
Many of these resources can be maintained in a library for members. Bunning suggests saving helpful documents on a CD, such as letters members have sent to school principals, completed 504 plans for food allergy management in schools and a book of member recipes. NC FACES maintains a library that includes food allergy books and videos.
Affiliation with national organizations, such as FAAN and the Food Allergy Initiative, can help local groups with resources, referrals and credibility. Medical advisers also help groups in their efforts to educate and advocate. For example, Wesley Burks, MD, chair of the University of North Carolina’s Department of Pediatrics and physician-in-chief at N.C. Children’s Hospital in Chapel Hill, North Carolina, serves as the medical adviser for NC FACES.
Burks’ association with the group provides added credibility and influence in the advocacy work that NC FACES conducts on behalf of those with allergies, Youngberg says. In addition, his office refers families who are seeking support to the group.
Growing the Group
It is natural to experience change as more people participate and the group adapts to the ebb and flow of members’ needs. Trish Gavankar, who co-founded NC FACES with Youngberg and three other playgroup moms, says her goals shifted over time.
“My drive to co-found NC FACES started from one place and morphed into something quite unexpected,” she says. “Initially, I needed to find other parents like me, who could understand and help me at the most difficult period surrounding my daughter’s initial diagnosis. Quickly, my goal changed to wanting my daughter to see other children like her, so she could understand she wasn’t alone.”
As more families participate in NC FACES, the group has been able to educate more people throughout the area and host more events. “Our ability to raise awareness in the community and in the school system has grown tremendously over time,” Youngberg says.
Although some support groups are run by professional organizations, many, like NC FACES and AFAA, operate as all-volunteer, parent-run entitites.
“Even though we’ve grown tremendously, we are still a grass-roots, volunteer-run organization,” says Narvaez, who serves pro bono as AFAA’s full-time executive director.
As AFAA grew, it built on its first efforts. Its no-food Halloween party transitioned into the Allergy-Free Zone at the “World’s Largest Trick-or-Treat” at the Mall of America in Bloomington, Minnesota. The event now attracts 5,000 to 7,000 children on Halloween.
Successful groups can often assist in creating new groups. AFAA has helped sprout six support groups in Minnesota, Narvaez says. The statewide nonprofit organization offers affiliation and assists fledgling groups with speakers, event venues, medical advisers and publicity.
“The new groups are helping us reach our goal—so that families throughout the state no longer need to struggle in isolation,” Narvaez says.
MOCHA has been instrumental in helping launch support groups in Illinois. Many leaders have turned to the detailed tips Bunning provides on MOCHA’s website to guide them through the beginning stages of establishing a group. New leaders also connect with heads of established food allergy groups, whether by perusing their websites for ideas, e-mailing for advice or meeting face-to-face.
Groups like MOCHA and NC FACES started small but are now a significant influence in their respective areas. FAAN recognized that impact by awarding NC FACES’ Youngberg the 2010 Mariel C. Furlong Award for Making a Difference. The award honors those who have gone beyond the call of duty to help those with food allergies.
“When we started this group in 2003, there was no way to know the path it would take, how much it would grow and how active it would become in the community. I just knew it was something worth doing and was committed to doing it,” Youngberg says.
Looking back, she remembers that handful of anxious moms getting together for the first time—and she shakes her head in wonder. “It never ceases to amaze me what parents can do for their children,” she says.