Today, we bring you an in-depth interview with Lynda Mitchell, an outstanding role model if you're interested in how to build a thriving community and make the world a better place at the same time. She is the founder of Kids with Food Allergies Foundation, which runs an award-winning online community and tons of other educational resources for families dealing with food allergy management.
Can you please tell us what prompted you to start the original community around this subject?
My son, Matt, now 23 years old, developed multiple food allergies as a baby, including milk and a number of other common foods. For children like Matt, even a tiny amount of a food to which they are allergic can cause a sudden and severe (and sometimes, fatal) reaction known as anaphylaxis. This reaction is just like those that occur to people allergic to bee stings. Knowing your child could go into anaphylaxis, especially when you’re dealing with a new diagnosis, is very frightening and overwhelming.
Let’s face it: food is everywhere, you have to feed your child, and finding truly safe food requires you to learn how to read labels religiously and plan for food situations everywhere you go. It’s a lot harder to manage than you’d think, unless you live with it like we do. Plus, at the same time, you have to be ready to treat your child should anaphylaxis occur with an emergency injection of a drug called epinephrine, just like folks with bee sting allergies use. Because of all of this, I started looking online for information and for other moms like me so together we could become better informed about how to best care for children with food allergies, how to feed them safely, how to prevent emergencies, how to navigate social situations and for moral support.
The original community was on a listserv, right? How did you gather the original members of your group?
In the late 1990’s there weren’t too many people online yet. I was among a small group of smart, passionate moms who had met online. We started a listserv to stay in touch and share information, recipes, and moral support. We grew – and grew – from there. Kids With Food Allergies Foundation is now a 501(c)(3) tax-exempt patient education organization, and our online community is one of the services we offer.
Do you have any special tips for maintaining a community over such a long period of time?
We did many things right at the beginning, simply because we were so passionate about the reason for being together and understanding how important it was for other parents to feel supported when they joined.
The most important thing we do is to keep things lively and interesting! We set some guidelines for participating early on. We also show by example how we expected others to be treated as a member of our community. This has created a culture that has lasted all of these years, and makes our community different than other groups out there. We make sure new members are welcomed into the community; we actively manage the community, we are always looking for ways to improve and for new volunteers to join our team to help take care of our community. We stay passionate; we have a sense of humor; and we try to show appreciation to everyone who’s made our community a success.
Lastly, we have made changes in the community as the needs of our users have changed. As our community has grown, we have developed numerous educational resources that are readily accessible on our site. This gives our members not just the opportunity for peer support but access to important information they need to keep their children safe and healthy.
Are you running Kids with Food Allergies by yourself, or do you have a staff?
I have a two part-time staff who help directly with running the community day-to-day, plus a core group of approximately 35 volunteers who work in various roles welcoming new members, answering questions on the forums, and taking care of technical aspects and moderation issues that crop up. Our volunteers are very important to us and do the lion’s share of the work involved in keeping our community active and a valuable resource for members. I have additional staff working behind the scenes to raise funds for the organization and to support our educational programs. I lead the day-to-day operations; we are governed by a board of directors and our medical advisory board creates and edits the educational resources we offer.
How do you promote your community? Have you had any PR successes?
We are very active on social media and use our Facebook page and Twitter to promote our community. We offer free webinars monthly from which participants learn more about our community. We have periodic events that we promote. We offer a free e-newsletter to share information of interest and to also promote active discussions of interest to others. Our educational resources are very popular and are indexed in search engines. We also get referrals from physician offices (especially allergists). Word of mouth from other parents is a big source of our referrals as well. We collect testimonials and share them.
Your site migrated from our Eve Community to Hoop.la; any words of advice for others considering a move?
I would say don’t plan a move in a vacuum – learn all you can about the platform as part of the planning process. Enlist support of a steering committee or team of volunteers to help work out some logistics so the move is as smooth as possible. Make an announcement ahead of time to let your members know what is coming – and outline what will stay the same, what will improve, and what will be different.
Test out the platform before going live – you will need to become familiar with permissions and capabilities of the new platform. And ask questions before, during and after migration. The help forums at Social Strata and the Social Strata team are very helpful before, during and after to make your move a success and to work out any issues that arise. Most importantly, stay positive and up front with your members about it. If some bugs crop up, fix them as soon as you can. Some people will invariably not like change – none of us really do. But sometimes you have to make a change in order to make things better for the future, and you need to explain this important point to your community’s members.
Are you leveraging social networks to support the Hoop.la site?
We have a very active Facebook page (http://www.facebook.com/kidswithfoodallergies). We use it to inform parents but also to tell them about other services we offer including our online community, which is so much more active than what we offer on Facebook.
Do you have a "proud moment" story from the community? (Or a crazy story?)
I feel proud any time I get a call or email from a parent telling me how something they learned from being a part of our community helped save their children’s life, or allowed them to do something they might not feel comfortable doing otherwise – like sending their children off to school, or taking a vacation, or going to a restaurant, all of which can be risky if you don’t know how to navigate those types of situations.
In terms of a specific example, a few years ago, three of our members, within a couple of days, each posted that their children had landed in the emergency room after drinking the same beverage. We encouraged them to report it to the FDA and to the company, and have the products tested by a lab. The product testing confirmed the beverage was contaminated with traces of cow’s milk, and led to a quick recall of the product nationwide, and potentially saved other children from having a severe reaction to the same product. Had they not been part of our community, they would have never realized that there were others who had problems with the product, and the recall might not have happened.
How do you measure success for your community?
We have some metrics that we review regularly, including the number of new members, the number of actively posting members and the number of new topics. We periodically survey our members to assess their level of satisfaction. A survey 6 months ago, for example, showed that an overwhelming majority of our members were satisfied with the help KFA offers them in dealing with their child’s food allergies and would recommend KFA to others. We’re proud of the results as they show we are fulfilling our mission.
Thank you for entrusting us with your community, Lynda, and thanks for sitting down for this interview! Keep on rockin!