HomeSupport group leader profile: Stephanie Lore of the Ottawa Anaphylaxis Support Group

Support group leader profile: Stephanie Lore of the Ottawa Anaphylaxis Support Group

January 12, 2018

We are proud to partner with support group leaders and community advocates across Canada to serve as local resources for individuals and families living with food allergies.

This month, we feature Stephanie Lore who is the support group leader for the Ottawa Anaphylaxis Support Group (OASG). The OASG was founded over a decade ago by Karen Eck, who stepped aside several years ago. After a brief period of dormancy, the OASG was revived in early 2017 by Stephanie, who has a young son with multiple life-threatening food allergies. We spoke to Stephanie about her success at revitalizing one of the most venerable allergy support groups in Canada.

Can you tell us a little about the OASG and how it came to be?
I knew the OASG had been around for quite some time, and there was a woman named Karen who ran it for quite a few years. About three or four years ago, her kids were quite grown up, so she decided to pass it on to someone else who took it over for a short time, and then it kind of died off. I was part of the group, and then I noticed the emails from OASG were getting less frequent. At that time, I’d had my second child and had a bit more time because I was off work, so I decided to try and re-start the group.

How did you do that?
Fortunately I had Karen’s contacts, I contacted her and was able to get in touch with a lot of the old members and was able to re-form the group, quite quickly actually.

Around mid-January of 2017, I was able to start it back up and get people involved. And then I think we had our first meeting planned for March. But it didn’t work out, so we had our first meeting in May 2017.

Where do you meet?
We have different locations. The first one was at my husband’s office in The Glebe. And I use a lot of the local libraries. The Ottawa Public Library has a fairly good rate for non-profit organizations, so they can hold meetings, and I can pick and choose different areas.

Ottawa’s quite big, because it goes so far east and west, and I’m central, so to try and balance it out and allow people from both ends of town to attend, I try to do it in different areas.

Can you tell us a little bit about your background? Do you have allergies yourself, or do your children?
I do not have allergies, but my six-year-old son was diagnosed with a peanut allergy at the age of one-and-a-half or two. [Even after the diagnosis] he was progressively getting worse, and wasn’t thriving, he was later diagnosed with dairy, egg, and nut allergies. So with him, it was learning how to manage all of that. It was a lot of work, and there wasn’t a lot of help. You’re sort of just sent home with an EpiPen and here you go, manage it.

You didn’t get a lot of outside support?
I just didn’t know a lot of people who had kids with food allergies. I guess I felt sort of alone. And the peanut allergy was easy enough, because it’s accommodated locally in community centres and schools. But the dairy allergy was really tough, even now that I have the group and I’ve met more people, but initially I didn’t know anyone who had a child with a dairy allergy. I found it really difficult to manage, and it took us quite some time to learn how to manage it.

And did the group help with that?
The group was fantastic because there were more of us dealing with it, and everyone had different resources. It was a huge support.

My son couldn’t really participate in daycare, because they couldn’t accommodate his allergies. So, I had to have someone come to the home, and that made us feel very isolated. And then it was difficult to go to birthday parties and other things, because there’s dairy everywhere. Having the group certainly made it less lonely, less like it’s just you going through this kind of thing alone. That was very difficult.

What draws members to your group? Do you advertise, is it just word of mouth?
Luckily, when I first started I had a really good contact list. I created a group website, where people can contact me and get a bit of information about what the group is and what we do.

I try to hold quarterly meetings, and we’ve had one fundraiser. I’m eventually trying to do different fundraisers, and we’ve held events like park playdates and things like that to try and get the kids and parents together to be in social setting, to have fun and not worry about food.

I also have a group Facebook page, plus a closed conversation group that’s not accessible to the general public. People can go on and support one another, whereas on the Facebook page I try to post things from Food Allergy Canada, recalls, research studies, and things like that.

How do you feel that support groups help families in the region cope with these issues?
People share information or products they’ve found or places that they can go eat that are safe. It’s such a great way to network and to get to know other people.

Thanks Stephanie for sharing your story!

To connect with OASG or one of our other support groups, visit our support group page. If there isn’t one in your community, we’ll help you get one started.

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