Strength in Community: Local Allergy Support with Renata Doerr, GBFAA

Renata Doerr, a board member of the Greater Buffalo Food Allergy Alliance (GBFAA), joins Dr. Whitehouse to discuss the power of local connections in navigating life with food allergies.

Together, they explore how local support networks can make a difference, and the GBFAA's impactful initiatives, including an annual awareness race and fundraising efforts that support community education. Renata also shares her family’s personal journey with oral immunotherapy (OIT), reflecting on the emotional and logistical challenges, as well as the long-term impact on their daily lives and mental health.

Whether you’re seeking support, looking to strengthen your food allergy village, or taking already action in your own community, this conversation offers insight and inspiration for building connection.

GBFOODALLERGY.ORG

Sunday May 18, 2205: Allergy Awareness Action 5k

OIT 101 - Established 2010 - The ORIGINAL OIT Network

Teen Advisory Group - FoodAllergy.org

3 Action Steps:
 1. If you are in the Western New York area, you can find the Greater Buffalo Food Allergy Alliance on Facebook and at gbfoodallergy.org. Our Allergy Awareness Action 5K is Sunday May 18, 2025: Allergy Awareness Action 5k

2. Look for your local group and get involved.

3. Contact me if you'd like me to speak to your local allergy organization or support group: Connect — Amanda Whitehouse Phd

Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme
www.kyledine.com

You can find Dr. Whitehouse at thefoodallergypsychologist.com and on Instagram (@thefoodallergypsychologist) and Facebook (Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist)
Email: welcome@dramandawhitehouse.com

Transcript

Speaker: 0:01

Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence.

0:22

So far this season, while I've been focusing on building and strengthening our support systems, we've been talking about specific people to bring onto your team. Today what I'd like to focus on is how we can expand that and reach out and connect with the local food allergy communities around us to build more individual connections and to build a sense of community and belonging. I am joined by Renado, who is a board member of the Greater Buffalo Food Allergy Alliance. for over a decade Renata is a physician assistant and a mother of four kids, two of whom have multiple food allergies, in addition to discussing the Greater Buffalo Food Allergy Alliance, Renata also shares her family's experience with OIT Oral immunotherapy, the impact that it's had on their daily life and mental health. The G-B-F-A-A recently became a 5 0 1 C charitable organization. And is working on both providing support and resources for individuals and families, managing food allergies, as well as educating the community and providing more resources in our area. While online support can be really helpful and convenient, there is something very special about being able to connect with people in person. I like to talk about our nervous systems and how the different things that we do and don't do affect them and Connecting with other people is one of the strongest safety signals that we can give our bodies. So especially connecting with people over our difficult or challenging or scary things that we have to deal with. Feeling like we have a community around us to help us in that can be extremely powerful and regulating.

Dr. Amanda Whitehouse: 1:57

Renata, thanks for sitting down to join me here on the podcast.

Renata Doerr: 2:00

Yes, thank you for having me.

Dr. Amanda Whitehouse: 2:02

Would you start out by telling everybody about your own, journey as an allergy family and how you got involved in this community?

Renata Doerr: 2:10

Sure. I have four children, and my two middle children are the ones that have food allergies. my second son is the one who has like the most severe allergies. And he, when he was about ten months old, I had given him, baby yogurt, and he ended up having full blown anaphylaxis from the yogurt. I am a PA, and I was at home with him when he ended up having the reaction, and it was just one of these things where he initially started having a rash, and I thought, oh, is he just irritated by it because he had sensitive skin, and then it kind of started progressing, and so I brought him to the ER with my toddler in tow, and it was pretty traumatic because he went from crying And like, kind of, very uncomfortably, in distress. And then all of a sudden in the baby car seat, stop crying. And that was even more terrifying because, they're backward facing, you can't see what's going on. And I thought, Oh my gosh, so I'm asking my three year old, is he breathing?, and he's a, how do I know if he's breathing? I'm like, is he moving? And it was a really very traumatic experience when we got to the ER was ER I was actually working at at the time. and I brought. Dominic in and by that, by the time we were just there and five minutes or 10 minutes, he had, facial swelling, full body hives. When we got into the ER, he started vomiting, started coughing, kind of asthma like symptoms, kind of the works. And, it was just, changed our world that day for sure. we didn't really have anyone with food allergies in the family. So it wasn't something we were, used to dealing with or, I don't think anyone has ever prepared fully for something like that. but it was a very, significant change in our lives that day. For sure. And then, it went on from, we tried soy milk for, because I was going to be transitioning from nursing home to, having him take a bottle, and obviously since milk, we realized he was anaphylactic too, he tried soy milk, and then he was vomiting after every bottle, we realized he was allergic to soy. So we got him evaluated, and he Just had a list of things that he was allergic to from, milk, eggs, peanut, multiple tree nuts, soy. And then he would even like have kind of oral allergy symptoms to like different fruits, you know, strawberry, kiwi. And, that was very stressful too because when you're not just trying to avoid one, food, but it's multiple foods. And you're trying to transition him, but then also what am I going to feed this child so that he gets all the proper nutrition that he needs for growth and development and all of those things was very stressful, too. So we moved to Buffalo when Dominic was just under a year and then I ended up finding the Greater Buffalo Food Allergy Alliance and meeting these other families who are dealing with food allergies. And it was just very beneficial to be able to talk with other people who are dealing with the same things that I was dealing with, to be, you know, supported, to kind of share ideas, to, just kind of go through these challenges together. So, I ended up, becoming part of the board for Greater Buffalo Food Allergy Alliance. It's been over a decade now and, it's been wonderful. I think we can't change the challenges that we're kind of given, but when you are able to, like, carry them together and lift one another up, the load of these challenges is just lighter and it's just easier and better.

Dr. Amanda Whitehouse: 6:00

I think that's true at many stages, but I'm picturing you especially then as a, as a newer mom with such a young kiddo and that early phase of realizing that you have in your hands a really complicated, allergy situation, to have that in person support at that point in time must have been so helpful as you were. Trying to navigate, just introducing foods and it's not as if you already have some foods that are established as safe and then new ones, it sounds like you were right at that point of every time you introduced a food, were you waiting to see if he had a reaction that sounds like something I wouldn't want to be doing alone without people around me who have been through it.

Renata Doerr: 6:37

Yes. And even, one of the first meetings, when we went there, everyone would talk about like, well, what allergies are you dealing with? And there was another mom who was like milk, egg, nuts. I was like, okay, you are officially my best friend right now. You know, we are going to connect and, talk about all these things because it was just nice to have somebody else who has had multiple food allergies and some of them that, were the same.

Dr. Amanda Whitehouse: 7:02

And then, what happened from there as far as with your own family and your kiddos?

Renata Doerr: 7:06

So, It was one of these things where Dominic was so sensitive and so severe, it was to the point where if somebody ate something with cheese or something and then touched him, he would break out in hives. So he was even to touch, to, he was just very sensitive that way. one time somebody had cooked burgers and there was cheeseburgers on one side of the grill and burger, regular burgers on the other. didn't see that there was any, cheese on the part that he was given. However, there must have been some microscopic amount and it was enough where when he ate that and went to go play in the backyard, again, full anaphylaxis. So it just kind of changed our world in that we were. not comfortable eating out at all. We couldn't even with our family because of the severity of Dominic, we just had to bring his food because I mean, now he's 15 years old, so it's been a long time, but at that time, not everybody. really understood cross contamination and even just these minute amounts that would cause him to react. so it changed our lives that way. And then Andrew is my third child. I thought, well, he could probably eat anything Dominic can, because Dominic's very restricted. So, but then when I gave Andrew hummus, he ended up having, you know, rash all over his face. And we found out that he was allergic to sesame. and then at that time they told us to avoid nuts for him as well, because they thought sometimes kids with sesame allergies could have nut allergies, just avoid all of it. So we did. and just for a while, we kind of just went along with finding the safe foods that were safe for our family. Everybody kind of eating the same thing and just not, having to worry about going out and, other things. But what's hard is when you have a toddler who's crawling in the floor and he's going to other people's places and obviously there's going to be food on the floor. It was just a very stressful thing where you felt like you don't want to be a helicopter parent, but for their safety, you have to be when they're younger and exploring and not able to tell you, specific symptoms when they did start to have reactions. So, we ended up. Kind of continuing on, Dominic's numbers were not going down after, a certain number of years. his milk was over a hundred. Most of his numbers were just very high. our doctor had talked about a milk patch, and we thought, if there's anything that can help, we'd, love to try it. So we went and did a trial for the milk patch for him. unfortunately that was not. any benefit to him and the, with being part of the, research group, every certain amount of time they would do blood work, but then they would also make him challenge, his milk. So they would give him small amounts of milk and incremental larger amounts. and it was not a great situation because the one visit that we had, He started having a rash and we're like, he's reacting, but they're like, Oh, it doesn't meet the criteria for enough of a reaction. So he needs to continue, the next dose of the milk to see if he can tolerate it. And he ended up having anaphylaxis with the next dose that they had. And we had multiple rounds of epi that were required and was just, pretty awful. So we stopped with the patch, and then we ended up finding out about OIT. Oral immunotherapy, and I kind of researched. OIT 101 for a while, just to kind of find out a little bit more about it. Our original allergist was not very supportive of OIT because it was newer at the time. this is going back seven, eight years and, he didn't have the, he said they didn't have the data yet to support it and its safety and everything. But for me, when I started looking more and more into it. Even though it was not being offered locally, um, I just thought, you know, Dominic is severe enough where we have to at least try. You know, there's people who were in the mindset, well, if you're too severe, you can't do OIT. But honestly, for me, I was like, he's so severe, we need this. we need, if, even if it decreases his, threshold for having anaphylaxis in any way, he's safer for it. And the other thing was too, with just like the multiple allergens, I was just thinking about in the future, you know, he's going to be, have to be independent. He's going to have to date someday. And it's one thing to ask your date not to have. peanuts, if you're going to be kissing them or something, but to say, and don't have milk, eggs, peanuts, tree nuts,. It was very difficult and I thought he does have to navigate this world. He does have to eventually eat out or be at friends houses and things like that. And so we, found Dr. Silver who was in, um, Cleveland. So it's about a three hour drive from us in Buffalo area. And it was a commitment because at that point I have four kids and, busy lives and, but for me it was an investment that was worth, the time and everything that we did for it and, both of my boys, Andrew and Dominic, both went through OIT. Andrew went through it for multiple, like for peanut and tree nut. And Dominic for milk, egg, peanut, and multiple tree nuts. So, and it was the best choice we've ever made. our lives today, it's like incredible, never could imagine the freedom that he has right now and just the independence and just the ability to eat so many more things, than, we had ever, he had ever been able to before. it's been truly life changing for us. for OIT, it's not always this perfect, linear, everything is. But, on the flip side, when I look back at now, before when someone would touch him with milk, he'd be breaking out in a rash and everything. And now, he's able to drink milk. He is actually to the point where he's eating pizza, like, ice cream, and loving. life eating these things, and then we just came back from a trip and it was just like, I was just looking back, like marveling at it because he went and he had ordered a burger with an egg on it and cheese and the works and loved it. And I thought he couldn't even have baked milk or the baked egg, when he had had a challenge years ago, cause his numbers were down low enough. He started having throat discomfort and just with the tiniest amount of baked egg and I thought This is nothing short of a miracle for us with this So he has also like taken a trip like his eighth grade trip to Washington with his class independent Navigated everything advocated for himself and did it safely and just it's just incredible So we you know still he takes the doses a certain number of days which is basically the food a certain number of days to maintain his, his desensitization but his numbers have dropped dramatically and he's just, I mean, he's done amazing. And so, I mean, Andrew too, I guess, I talk about Dominic more because of the severity that Dominic really had, but. Andrew is just free eating too and it's funny because Dominic, I feel like he's always been like a foodie, but he just couldn't have that stuff. And like when we went to, a buffet at, the, at the Dominican where we were and he was in heaven. He could try all of these desserts, all of these things and truly enjoy it. And my biggest thing was just. His safety, I mean that was the biggest key for me with OIT was just he is so much safer out in the world He is, just tremendously safer than he was prior to that treatment

Dr. Amanda Whitehouse: 15:25

Your family is such a good example of how it's all relative in terms of how complicated and how hard our problems are because to you. your third son, his allergies seem like easy breezy compared to Dominic having so many and being so reactive. for some of us, one allergen is a lot to handle, but all that you had on your plate, it's amazing how. far you've come in terms of, being so free now. And I love when you talk about OIT. I think a lot of people, especially if they're considering it and they haven't done it yet, they're really weighing, the medical aspect. And what's the risk of us having anaphylaxis if we just avoid versus doing OIT? And what's, how much will he be able to eat? And how many days will he have to dose? And I don't think people talk enough about What you're saying in terms of the freedom and the mental health, the, the confidence, and such a different level of calm for you and everyone in the family now.

Renata Doerr: 16:18

Absolutely. he never would have been able to make that trip to Washington, D. C. for himself. He, because we couldn't even go out to eat. We couldn't even trust other people preparing because it's just the smallest amount of, cross contamination. And now, it's given him that confidence, too, that I can do this. I can manage this. I can, go to all these places that I want to go and do these things and I, I don't have the limits that I had before and he feels safer doing it. Now granted, sometimes teenagers do not make the best choices but for example, in his, one of his classes, they were brought in foods from the world and His teacher just kind of said, well, those with food allergies, you know what you're allergic to, don't eat what you're allergic to. However, people brought in things that they made homemade. There was no list of ingredients. There was no anything and so he said, I thought I was eating a lemon cookie, but they didn't tell me there was walnuts in it. I didn't know there was nuts in it. I thought it was just a lemon cookie. So he, without obviously having the ingredients there, took a bite of it and he's like, Well, I just, I tasted it, I knew there was nuts in it, so I just spit it out and thank goodness he didn't have any reaction, but I just, I said to him, thank goodness for OIT because it might, would have been a very different outcome prior to this had you mistakenly eaten something with nuts. Even if you spit it out, you would still have ingested enough, but then the other thing is, you have to be. You just have to be more careful and, I reached out to his teacher and I said, it's just not a safe practice to expect the kids with the food allergies, number one, to just know what's in these things and there was no ingredients listed. They can't be making educated choices. number two, really you should reconsider having people bringing in nut products just in general in any of these foods if you have a milk or an egg allergy, like in the past, Dominic would just avoid all baked goods because you just go, well, I don't know if there's gonna be milk or egg in it, but there's things like now that there's people making things with like almond flour or you know, cashew flour or there has, there's peanut butter in it or somebody thinks it's a. White chocolate chip, but it was a macadamia nut and there's just things that are just harder to just look at and identify as far as not wise. it was one of these things where I said, I'm, I am glad that you want to try new things. However, we have to do it safely and especially, when you don't have a real list of what the ingredients are, you shouldn't just. Assume, even if somebody said, Oh, it's a lemon cookie, that's what it is, because to them it may not make any difference that there's walnuts in it, but to you it does make a difference, even with thinking about sending him off to college in a couple of years, I'm so much more comfortable with that than I would have been, years ago before OIT. I mean, it was just really challenging. That would have been that much harder.

Dr. Amanda Whitehouse: 19:29

Well, and speaking of that, I have to ask because I'm sure people can already tell just from this short conversation, you are so mellow, you come across as so calm, I think you and I started connecting more when we were both doing the patch trials, we were in different phases of it in that clinical trial, but even back then, before you started this OIT journey, you have always come across as It's so calm and not anxious and not a helicopter parent. And I am curious for those who feel always frantic, is it like that on the inside? is there something that you have done to manage it so well? Or what's your experience on the inside versus how it comes across to us?

Renata Doerr: 20:08

I definitely have felt the stress. I've definitely have felt the anxiety around, I used to love family gatherings and all the food. You know, my one side is like, we're half Italian, and it's all about the food and all the stuff. And then when you have a world of kids with food allergies, it just changes that dynamic. But I feel like what I've done is I just try to be as prepared as I can. I mean, you try to think of what are all the potential things that you can, what you can control, with the situation. You do that to the best of your ability, and then I think I've always tried to, with the kids, want them to Respect and understand their allergies could be severe, but to not be in constant fear of them. To just try to control everything that you can, because that's all that we really, can do. I don't want to project this feeling of being anxious about all these things, because I don't think it's beneficial. I think sometimes it can cloud your judgment. I think it can, Just kind of have more of a negative impact. I'm a planner. I just try to control everything I can. Obviously, there's things that are out of your control. You think you've checked all the boxes and life is going to happen and something different is going to happen. You think, like I thought even with his teachers, that they were all aware of all those food allergies. Please let me know if there's any food being involved. And there was no one who reached out, there was no one who, let me know that food was going on or, all this kind of stuff. I try to talk to others who are kind of, if there's something ahead that I have never dealt with before, reaching out to people who have dealt with it is a huge benefit. how did they deal with it? What did they, you know, have to consider? Was there anything they didn't think about that came up that, I should, prepare for and stuff like that too. So I think. That's what I've tried to do, for each different stage, there's a different level of challenges when you have an infant, a toddler, a preschooler. Dealing with food allergies. And the next level is when they enter school, all the things that go along with entering school and being more outside of your bubble. And then after that, as they enter teenage years now, that's a whole other level, of like independence and things like that too. And so I think it's been a benefit having people around me that have gone through it. I think it's been a benefit, sharing experiences with other people and sharing these resources and, Not doing it alone.

Dr. Amanda Whitehouse: 22:49

I know a lot of that has been working with, Greater Buffalo Food Allergy Alliance, and with them the schools and other, other community, agencies and organizations. So I would love it if you'd talk about that piece of things in terms of what you've seen, what you think is the most effective, or what there's the most need for in terms of collaborating with those resources that we are trying to reach out and communicate and control what we can.

Renata Doerr: 23:10

Yeah. whenever someone is going through something challenging, I just think to find your people is so beneficial. To find the people who are at that same level, who are with that same struggle. Because I think sometimes people are hesitant to open up and say, I'm struggling with this, or, to not. Have something a hundred percent, Feeling confident about it, and they think of that as a weakness, but I really think it is a strength to come forward and talk to somebody about what you're struggling with, and what your challenges are, and especially when you have a group who are dealing with the same type of challenges that you're dealing with, Opening up, then other people will open up that they've struggled with this too, you don't feel alone, you don't, feel like you have to reinvent the wheel and start from scratch and do everything on your own because especially when you're a newly diagnosed, child or individual, it is so overwhelming to try to Bye. Start from, you know, having, just start from what are your, basic foods that you need? that are safe? What are your basic, kind of finding your, footing and all of that? it's just so beneficial with, these support groups as far as greater Buffalo, we've, we have a very active Facebook group. So even those, in the past we did have some in person meetings, but I feel like around 2020 and even slightly before it started to dwindle as far as how many people could come in person, come together in person. So, the online has been wonderful because people can ask questions in real time, I have these allergies, have you found Easter candy that is safe? I have these allergies, what breads, what things have you found? And just being able to kind of share those resources with one another, with other people who have the same allergies, and not have to do all the research yourself is huge. And then also, we, have done educational talks in preschools and elementary schools about food allergies. We've been, working with our local school district a lot over the past couple of years. And there is also power in numbers, I feel like too, when you align yourself with other people who want. To make changes. You are so much more. You are so much more able to have these changes made when you were working in a group than when you're just trying to navigate it all yourself. everything from even our local school district. You know, they didn't even used to have like the allergens listed on the website for any of their, school lunches. So it was for years, I mean, Dominic was never able to eat a school lunch. I mean, I just brought him lunch every single day and that's the way it was. But after we completed OIT and I felt like, he is safe to start eating some lunches and have that. Social opportunity that he never had, If there's things that are safe for him, I'd love for him to experience that at school. I think back to when he was, in kindergarten and you're trying to keep him safe. And I said, just keep it a distance in between because they spill the milk and they spill the yogurts. I mean, those things go flying. and I went to visit him a few days into kindergarten and I saw he was at a table. All alone and how heartbreaking that was because his whole class was at one table and he was at another table by himself and I thought, this poor kid is he's safe. just the social impact on that. I just was heartbreaking. Navigating that social and physical, health. Going back to now, with our group that we kind of move forward with, now we have allergens listed. Now, we didn't know that they could actually make accommodations in the cafeteria. people who had gluten allergies or intolerances could get gluten free rolls or, you know, they do have substitutes. Dominic could have, Two juices instead of a milk that he could have with the lunch and there's just different things that you were not aware of before and with working together to make things more allergy friendly, to spread the awareness that these accommodations are available for, students with food allergies. we're working, together. We were for, people who come into new to the district. to get resources of these are, resources that are available to you, as a food allergic, student in the district other things that we've done is Epi training, EpiPen training and, different schools. We've also, attended a science fair to kind of any of the students and it's amazing how many. Kids, how many are just interested in learning about it, interested in, being aware of how to give their friend medicine if they needed to. And we've had parents approach us who said, Oh my, this is wonderful because my son has a friend with food allergies and they drop them off and they say, Oh, just so you know, the EpiPen's in the backpack. But she was like, I've never seen the EpiPen. I've never used it. I had no idea how to use it. The time to know how to use it is not in that emergent moment. And so, just trying to spread awareness, trying to educate, the more people that are EpiPen trained, the, there's going to be lives saved. That, people are safer in our community. And then we've been also doing, advocacy work, within the group, too, and trying to get more EpiPens on first responder, units and vehicles. we've been, working on, writing to legislators about, legislation that would protect the food allergic community. There's just a lot of things that, we've been active in doing, and I think, it's been wonderful having, People who want to make progress and make change, and doing it together, it's been so much more productive and so much more beneficial, and we hope to just continue to do that throughout our whole area.

Dr. Amanda Whitehouse: 29:30

I think it's great, and I'm appreciative for you and the other folks who are more active in getting that stuff going, because obviously the change, the social change, and the impact that we can have is huge, I find for myself, for all the people that I work with, when you get involved in that way, it pulls you out of your own focus on our lives and our problems and what's hard for us and it, it really shifts the perspective in terms of this being part of a bigger thing there's usually someone else that you can focus on and say, okay, this is a bigger problem than just what's happening here in my house and in my life and I think that helps with the anxiety The other difficult feelings that we have about it. Mm hmm. Yeah, absolutely. And it fits everybody. So, one of the big projects that's newer again for the Greater Buffalo Food Allergy Alliance is the 5K that was started up again last year. Do you want to talk about that?

Renata Doerr: 30:22

Yeah. So, we are very excited. It's our second annual 5K, and It is gonna take place on May 18th at 10:00 AM in Orchard Park, and it's just a wonderful, last year was fabulous. We had over 300 people participate and people who are part of the allergy community and also the non allergy community. Community. people who were just runners who kind of joined in and it's a very fun family. Friendly 5K that you can run, you can walk, There's music, there's raffles, there's a lot of wonderful activities, involved in there. We do EpiPen training as well, while we're there, and then it's just, I think, a great time, for families to meet one another, in person, for other kids to see that there's other kids with food allergies, like if they're in a community or in a location where there's not that many children who have food allergies and they feel like It's only their burden that they're dealing with. It is so nice for them to meet other kids and individuals with food allergies and know that they're not alone. And then just for, people to get together and support one another and show up for one another and spread awareness. So it's a great, great Lots of fun activity. And last year we were really lucky. We had Buffalo Bills coach Sean McDermott as our race starter, which was wonderful too, cause he has a family members with food allergies and, yeah, it should be a great time this year as well.

Dr. Amanda Whitehouse: 31:54

One of the most impactful aspects of the race last year for me and some of us who were chatting afterward were some families who showed up who were newly diagnosed. And to find the community in that way, surrounded by, celebration and making a big deal out of these awesome kids I thought that was really special.

Renata Doerr: 32:12

I think, the in person part is It's so significant, especially when you're newly diagnosed, to just actually meet people with this, dealing with the same allergies. And we did have multiple people reach out to us and, there's been people who are like, we want to be involved in this event next year and we'd love to help because it was so impactful for me and my. Children to be there and to be surrounded by, other people with the same challenges. It was just wonderful. And I, I don't think that there's, there's a wonderful, I mean, it's amazing all the things that we could do online now and then, you know, the real time feedback and all that. But there is that element of being in person and being face to face with people and meeting them, where they are and kind of just. Being able to connect in that way.

Dr. Amanda Whitehouse: 33:03

and I know it took so much work from those of you who were planning it for so long. I just want to say thank you to you and all the folks who put so much time in because it really is impactful in a different way. to see the adults Treating this is important to see coach there and talking about how important it is and how we need to take care of and be aware and educate people on allergies is so much different than what they usually hear like, okay, take your EpiPen. We have to call the teacher. We have to check the ingredients. All of the day to day management that we do sounds so different from the energy and the language around. You are also important to us and we're celebrating and we're doing this fun thing for you. Just because it matters to us., So, and the organization has just become a 501C, right?

Renata Doerr: 33:47

Yes. We just officially got 501C status over the last few months, which was wonderful. And so we're officially a non profit, which is just going to help us with being able to receive donations so we can kind of further our advocacy and further our impact, in the community. So, we're very excited about that.

Dr. Amanda Whitehouse: 34:06

Yeah. What would you tell other people who are maybe on the fence then about getting involved, looking to see if they have a local group in their city or area and then maybe stepping up into leadership

Renata Doerr: 34:17

when you're first, dealing with, The new diagnosis, I just think it's very important to find a support group, whether, looking forward to see if there's one that is meeting in person in your local area, if not joining one on one of these platforms, whether it's in a Facebook group or another platform, even if it's online, just having someone to kind of and other people who are in your same situation to Like I said, share resources, go through it together so that you're not doing this on your own, I think is key. And then I think after you are at a point where you feel like, okay, now I have my, routine, my things are under control enough. I think it's just important to, if you are able to, even in any small way, any small amount of time, it makes a difference. It's amazing how how much of a difference you can make to other people, and how much easier you can make other people's lives who are coming after you by, standing up for things that you believe in, for Pushing for these changes that you know will make you, your children and other children safer, whether it's at school or with another activity, and being that advocate, because you are your child's best advocate, and You, can take that role that much further to just advocate for others who aren't able to advocate for themselves.

Dr. Amanda Whitehouse: 35:58

Yeah, and it's reciprocal we come in and out of phases where things are under control and then maybe a little bump or a shift and you can contribute and then you're still involved and connected when you need the support back. I had kind of reached that point and then then started diving into as you described like, okay, We're at a point where we are going to try to take some action on some of these things. I want to thank you because we had done another treatment first and then we did that, we did peanut patch clinical trial. Then we also moved into OIT from there. I had doctors kicking me out of their offices just for asking about it. I had, of course, family members saying, you're going to do what? You know, nobody understands. I knew I was doing the right thing for my child, but to, to know you and to say like, okay, there's another person out here who is making me feel like I'm less alone. A real person, whose face I can see, lives in my community, was so different for me, when I felt like I was the only person that I knew, other than strangers online doing this thing. So thank you for that. and I think that speaks to the back and forth. I remember coming to speak as a psychologist about mental health, but then myself feeling like, oh gosh, I'm so glad I saw Renata, and I could ask her about this, this, and that, and um, It, it, it's so, it's just so rewarding and helpful to be connected and, and we can't always anticipate what that's going to look like or who that will show up in the form of.

Renata Doerr: 37:19

Yeah, absolutely. And then I think as our kids are growing up too, it's amazing. Like Dominic, he's 15 now and he just joined FAIR's, teen advisory group. And. He wants to become an advocate, kind of now that he's kind of seen that changes can happen and the benefit it can have. He's like, I want to be involved. And so he just, started with this group and by meeting with other He's like, I think I want to start an allergy awareness club at my school and you know what we could do mom, we could actually go and talk to elementary school kids and middle school kids and we can tell them about how to navigate these different things or what you should do in a situation when this happens and we can, help them. And it was just amazing, to hear that. He has. He's taken this challenge in his life, and now he's wanting to help others with it, and, it's just awesome.

Dr. Amanda Whitehouse: 38:23

It is, and it's no surprise, because he's seen his mom doing so much work on that, and, and how powerful for kids to hear that from other kids. It's one thing when we adults are, are lecturing them or showing them things, but to talk to other kids who understand is really powerful. That's awesome. Yeah, I'm glad your kids are all doing so well now, I think it's, I think people appreciate hearing experiences with OIT and with other treatments because I know it can be intimidating. There's a lot of information out there, so I appreciate you sharing that piece of things for everybody who's listening, too.

Renata Doerr: 38:54

Absolutely. I mean, like I said, if it's something that somebody is even remotely interested in finding out more about, you know, start doing research about it, start talking to other people or reaching out to people who've done it so that you can get more experience, more information and feel more comfortable about it. But for us, it really has been truly life changing and a blessing and I'm so thankful for having done it.

Dr. Amanda Whitehouse: 39:22

That's so amazing. The last thing that I like to ask everybody is tell us something positive about food allergies.

Renata Doerr: 39:28

So I would say we've had lots of, positive things. I would say this new, with Dominic talking about, well, maybe I want to go into also politics because maybe I can help with legislation for, people with food allergies. And, Having our children become their own advocates, becoming an advocate, I think, That's been a definite positive change. I think other things would be, we're so much more aware of what is in the food that we're eating, where before food allergies, we didn't, you didn't necessarily need to read labels like we did, and just kind of that was, something where we started, paying more attention to for food allergens, obviously, but then also just being aware of what is in our food, and what we're ingesting, and what Maybe we can make better choices for other reasons, too. So I think, there's been definitely positives. The rainbow from, the challenges that we've faced.

Dr. Amanda Whitehouse: 40:28

I agree 100%.

Renata Doerr: 40:30

Well, thank you so much for talking today Thank you. I think it's amazing that you're doing this and I think it's awesome that you can impact people. further than the people who you're seeing personally one on one by, putting out this podcast and putting out this information and sharing these really amazing people, who you've had on and the information. I think it's awesome. So thank you for doing that.

40:54

You'll find links to everything Renata talked about today in the show notes. And if listening to our conversation has created some motivation in you to take some action, here are a few ideas for you. Number one, if you're in the Western New York area, you can find the Greater Buffalo Food Allergy Alliance on Facebook and@gbfoodallergy.org. You can sign up for our upcoming allergy awareness section 5K on Sunday, May 18th, and you'll find the link to that in the show notes. You aren't in our area, look for a local group near you and see what's out there. And if you have one but haven't been involved, consider checking out what events are going on. It's easy for us to think that the less we think about our allergies, the less stressed we are about them, but it's actually in connecting with other real life people and building community around them that we feel safer and more confident. And number three, if you're finding the podcast helpful and you'd like me to speak to your local allergy organization, please don't hesitate to reach out. I. Really enjoy presenting for and engaging with groups like this. Obviously the work is very meaningful for me and I'd be happy to talk to you about how I can do that for your specific organization. The link to my contact page is in the show notes. the content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda White house. Thanks for joining me. And until we chat again, remember don't feed the fear.