The Saskatoon Anaphylaxis Support Group (SASG) was founded in August 2016, and already boasts more than 40 members who participate in person and/or on the SASG’s members-only Facebook Group. We spoke to group founders Michele Jungwirth and Charlene Siwak to find out the secrets to their success.
Can you tell us how you two came together to form SASG?
Michele: Charlene and I have known each other for several years, our children went to elementary school together, and each of us has a child with allergies. And we found things in the school environment, and even in the home and family environment, very challenging. We got to talking, and we got to know each other. When our children were first diagnosed several years ago, we didn’t have resources, information or education available, to the extent that it’s available now, and we told each other that we felt very alone. Because as we went through the years with our children, we realized that people don’t really know too much about allergy. It’s very complicated to explain and to try to get people to understand.
So, there’s a social aspect to it?
Michele: Yes, just basically to have somebody that you can talk to who can understand you, and not feel like you’re alone. That’s why I think we started the group, because we didn’t want other parents and families to feel alone. And [wanted them to know] that there were resources and information out there that they could be directed to.
Charlene: Another reason that we wanted to work together is because there is power in numbers. We were supporting each other, but we’re also hoping to change things in Saskatchewan, with legislation, safety in schools, that type of thing as well. And to start that process is a long, hard road, and we knew that we’d need other people to be involved, to help move issues forward, like EpiPen® training in high school and things like that.
When did you get together to form the group?
Charlene: Oh, we were talking about it for years, and then we really got serious about it last March (2016), I think. That’s when we first started meeting and deciding we were going to move forward. And then we spoke with Food Allergy Canada in April, right Michele?
Michele: It was sometime in the spring of 2016, so it’s been about a year-and-a-half that we’ve been around, but September 2016 was our official launch.
There were no anaphylaxis resources in Saskatoon before that?
Charlene: Well, there was no support group.
Michele: Only the doctors themselves.
Charlene: We have a goal of having three to four meetings a year. We had our inaugural meeting at the end of November (2016) in the multi-purpose room of a local school. Two people came out to that meeting, which we thought was a huge success, being a new support group. We also run a Facebook support group and we’re recruiting new members practically every week.
How many Facebook group members do you have?
Charlene: I think we’re up to 41 members now, which is great. And we’ve also done a video livestream on Facebook, which was a big learning curve for Michelle and I – it was a bit out of our comfort zone. Because the winters here are pretty cold, it’s hard to get people out in the evenings, kids have activities and things like that. So, we thought that was a good way to have people join in – by livestream.
Given that you had start-up issues, are livestreams something you think would be good for other groups?
Charlene: I do!
Michele: I do too. It was a relief to have it done, because we were so nervous, but I would do it again because we reached so many people.
Charlene: We were a bit nervous, because we’re not TV personalities, so I was overly concerned with how I looked, and “Am I speaking too quickly?” that kind of thing. Michelle looked like a professional announcer, but some people are just more natural in front of a camera.
Michele: Members can go onto our Facebook page and still watch that video. We’ve brought it up, “if this is a question, go back and watch our video. We talked about this topic.” It’s great that it’s still on there as an earlier post. I think it’s a great way to reach people. And especially for our group, we’re finding that we have a lot of members from rural Saskatchewan and Alberta. There might be some food allergy support groups there, but none affiliated with Food Allergy Canada. I think [people] look us up [on Food Allergy Canada’s website] and see the affiliation, so they join us. That really affects who is around for an in-person meeting, when some of your group is from rural Saskatchewan or Alberta, they’re obviously not going to drive in for a meeting.
How does that affect how you stay in touch with your members?
Michele: We’re trying to find a way to reach our members, because they’re so spread out. I think our membership is generally young families with babies and young children who have been newly diagnosed. And those people have very busy lives, they can’t necessarily run out and sit for a couple of hours in a meeting, and some of them don’t want to leave their children with other people specifically because of the allergies. They’re worried that something could happen.
And not to toot our own horn, but it sounds like your affiliation with Food Allergy Canada is a benefit?
Michele: Oh, yeah! It’s nice to have that kind of backing so people know we’re legitimate. As a parent you’re always looking for credible information. And associating with Food Allergy Canada really has that.
Charlene: I really agree. [Food Allergy Canada] provides factual information, and their website is very helpful. We regularly forward our members to interesting links on the Food Allergy Canada website.
Michele: And our meeting in October was tied to the Teal Pumpkin Project, with a Halloween Teal Pumpkin family fun event.
Michele: We invited families to bring their pumpkins, and we provided the teal paint and paintbrushes, and crafts and colouring for the kids. This was a no food event, just a meet and greet and non-food treats. We had this event to raise awareness of the Teal Pumpkin Project and have some Halloween fun for kids that doesn’t involve food treats. We both participate in the Teal Pumpkin, and I just love doing it, because I love seeing it. Last Halloween, when a child came to our door, we had these non-food treats. The look on the mom’s face was worth the whole thing to me. I wish that could have happened when my son was younger.
Thank you Michele and Charlene! Keep up the great work!
Visit our support group page to learn more about support groups, how to find one or set one up. For parents of children recently diagnosed with a food allergy, check out one of our upcoming webinars on the basics of managing food allergies.