How much is virtual, and how much is people meeting face-to-face?
It’s mostly online support, but some groups are more active as far as meeting up. With the Michigan group, we do outings about once a month. The Halloween and Easter events are a lot larger. The online support is amazing. I feel so close to so many of these people, and I haven’t even met them!
When someone starts a new group, they think it’s going to take off right away. But it takes work and sometimes people feel uncomfortable coming out and meeting you if they don’t know you. So I try to tell the leaders – the online support that you’re offering in your area is huge. Then, if you can get them to come out, that’s wonderful, too.
What does the NNMG offer to mothers who have just found out their child has a food allergy?
Support, not judgment. We have a lot of women in our group with strong personalities so I like to keep it as supportive as we can. Everybody does things differently. We just want to offer support and suggestions.
What quality of life issue do you hear about the most?
School is a big issue. A lot of the kids are being excluded and it’s really hard on the parents and kids. Hopefully we can work towards non-food parties and celebrations.
How do we get there?
We just need more education and awareness. You have to be involved. With my son’s school – I probably bug them, but I send them e-mails and articles all the time. Thankfully my son’s class is food-free for celebrations.
Next year, the whole school district is moving toward food-free celebrations. I think the CDC’s new voluntary guidelines for managing allergies and anaphylaxis at school have a lot do with that. I’m really excited about this development.
Strides have been made in food-allergy awareness. But where do you think more work is needed?
People need to be able to recognize food allergy symptoms, and not be afraid to use epinephrine. When I was working on Michigan’s stock epinephrine legislation, I would hear all these stories about people being so uncomfortable to use it [the auto-injector].
You were instrumental in getting Michigan to pass the law requiring schools to have epinephrine on hand. What was that experience like?
It was challenging. It was the first time I did anything with legislation, so it was definitely a teaching moment for me and other people in my group who were involved. We stood up and testified.
When you tell your story from an emotional standpoint and you let your guard down – it really helped for them to see that it was real. And we had to tell them that epinephrine is not going to hurt anyone.
When you’re not advocating or moderating online, what are you up to?
I volunteer in Evan’s kindergarten class as much as possible. He sits at the regular lunch table because he was being isolated at the peanut-free table. He’s at the end of the table, but they cover the table with paper every day. I like to be there in the lunchroom and make sure they’re on top of that.
What impact has your being involved with the NNMG had on your son with allergies?
I don’t think he really understood it too much in the beginning, but now that he’s in kindergarten, I think it really means a lot to him. He’s starting to see that he is a little different from other people.
It’s really special for him because he has friends that he’s known since he was 3 years old. He knows these are his buddies, and they have food allergies, too.
Find the No Nuts Moms Group here.
Honorees in The Allergy Advocates Series
Cathy Owens: The Nurse Who’s the Allergic Student’s Protector
Karen Harris: Food Allergy’s Educating Dynamo
Jenny Sprague: Courageous Woman who Unites Allergy Bloggers
Gina Mennett Lee: A Voice of Reason for Food Allergy at School, Daycare
To submit an “Allergy Advocate” candidate for consideration, write to email@example.com, and tell us what’s special about your nominee.