FAACT's Roundtable

Ep. 217: Exploring Alpha-Gal Syndrome

• Candice Matthis, Debbie Nichols • Season 4 • Episode 217

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The US Centers for Disease Control and Prevention states, “Alpha-Gal syndrome (AGS) is a serious, potentially life-threatening allergic condition that can occur after a tick bite.” But how do you get AGS and tackle this condition? We’re exploring living with AGS with two change makers and AGS powerhouses, Candice Matthis and Debbie Nichols. They are the founders of Two Alpha-Gals and the new Alpha-Gal Foundation, which is committed to offering solutions. We’ll learn more about this growing community of support. This podcast is part 1 of a two-part series exploring life with Alpha-Gal Syndrome.

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Caroline: Welcome to FAACTS Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions, each episode will explore a specific topic, leaving you with the facts to know or use. Information presented via this podcast is educational and not intended to provide individual medical advice. Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation. Hi everyone, I'm Caroline Moassessi and I am your host for the FAACT Roundtable Podcast. I am a food allergy parent advocate and the founder of the Grateful Foodie Blog. And I am FAACT's Vice President of Community Relations. The US Centers for Disease Control and Prevention states Alpha Gal Syndrome, also known as AGS, is a serious, potentially life-threatening allergic condition that can occur after a tick bite. But how do you get AGS and tackle life with this condition? We're exploring Living with AGS with two change makers and AGS powerhouses candidates, Mathis and Debbie Nichols. They're founders of the Two Alpha Gals and the new Alpha Gal Foundation committed to offering solutions. We'll learn more about this growing community of support in this podcast which is part one of a two part series exploring life with Alpha Gal Syndrome. Welcome Candace and Debbie to FAACTS Roundtable Podcast. We're absolutely delighted and thrilled to have you on the podcast. I am such a fan listeners. I fangirled them before we started. I love your work, I love your information and your website and how you're just changing the world. So welcome.

Candice: Thank you for having us, Caroline.

Debbie: Yeah, we're so excited to be here with you today.

Caroline: I am too. It's going to be a great day. Now let's kick off our conversation today with getting to know both of you. Debbie, can you share your backstory and how you met?

Debbie: Sure, I would love to. The backstory for me with Alpha Gal Syndrome is that I started seeing symptoms back when my kids were little. So probably around 2007 or 2008. And what I actually noticed first was this terrible joint pain that I had. I would lie on my side to read them a picture book and I would try to get up, but I would really be in too much pain to move my hip, to move my side, to move my shoulder, and that didn't seem right. In my, you know, early 30s, I started to develop additional symptoms. You know, I had brain fog, which I occasionally still do. It might come out during this recording and lots of gi. GI pain. I would feel sick and fevered so I would go to the doctor and I would try to figure out what was wrong, and the doctor would send me to specialists who had no idea what was wrong with me. Nobody could find any evidence of anything. And, you know, over a period of a couple of years, I saw neurologists and orthopedists and gastroenterologists. Too many to really count. I had MRIs and X rays and blood work and went on all kinds of supplements and medications, just trying to manage the pain, just trying to figure out what was wrong with me. And everything was coming back normal. And so, you know, when they would tell me that I was fine, I would leave their office defeated, like, maybe this is all in my head. Maybe the problem is with me. And I would quit until the symptoms would come back and they'd be bad enough that I would start this whole thing over again. It was about 2015 where I finally made the connection with red meat. So I had gone to a wedding with my husband, and the main dish had been a steak, and I enjoyed that. But, you know, around 2 or 3am in the morning, I woke up with this splitting GI pain. Like, when I say it was the worst pain I've ever experienced, I mean it. I really thought that my gut was splitting in half and I wasn't going to survive the night. So I stopped eating steak. You know, I didn't. I didn't eat a lot of ground beef at that, you know, at that juncture in my life. So I stopped eating steak, but I didn't cut out anything like pork or dairy or these other things that are potentially triggers for Alpha gal syndrome. So, you know, the symptoms started returning, and I started the process all over again, you know, requesting to see new doctors and new specialists and still not getting answers. And, you know, in 2018, I even had my gallbladder removed, just trying to eliminate this GI pain that I was experiencing. But it wasn't until my family moved to Blacksburg, Virginia, and I met Candice at a birthday party for a friend. We went to a luncheon that I really started to connect the dots. So I watched her order this lunch, and she said, I'm going to need, you know, my. My salad without sesame oil. Can you check this ingredient? No croutons. And I was like, oh, okay, I'm in a safe space because I'm going to do all those things because I'm cutting out all these foods that I think are triggering all my symptoms. And we became fast friends from there. And I guess I'll turn it over, I'll turn it back to you so you can Hear what happened after Candice. I met at that birthday lunch.

Caroline: Oh, Candice.  I am in the story. Continue, please.

Candice: Okay, so I'm going to go back to 2007 prior to Debbie and I meeting, because I was actually bitten by a tick that year and about a month after that. So I was pregnant with my third child at that point, and I was extremely pregnant. So I had the tiniest C tick on my pinky toe, and it was there for about three days. I could not get it off. Being so pregnant. Thought it was a speck of dirt. It was the tiniest thing I think I've ever seen. And about a month after that bite, I started having major GI symptoms. So I went on a quest for about six months trying to figure out why did I all of a sudden start having these major GI issues. I, you know, would get super flushed, feel like I was going to pass out. Almost like what Debbie was talking about with that stabbing kind of pain in. In your stomach. And I was diagnosed with a wheat, barley, sesame, and rye allergy about six months later. So cut that out. Things started to improve, but I noticed over the years that I would have issues with red meat pork. I didn't connect the dots. I always drew it back to wheat. I was like, well, maybe I've just been glutened. And it wasn't until 2018 that I sought out the help of a functional medicine doctor. Um, I also have some thyroid issues. So I was trying to get kind of to the root of food allergies, thyroid. And I had probably 23 vials of blood drawn at this appointment. Was not tested for Alpha GAL Syndrome at this point. So I was put on probably 11 or 12 supplements. I was on this regimen for about five days, and I woke up on the fifth day, which happened to be Super Bowl Sunday of 2019. I get my years confused, 18 or 19. And I was in anaphylaxis, but I did not recognize it at that point because I woke up to the room spinning, seeing double, my heart racing, feeling like I was going to pass out, having just GI issues. But I didn't present with hives and swelling, so I didn't know that those were anaphylactic symptoms. So I, like Debbie, ended up going down this really intense rabbit hole of seeing specialists, going to the ER. I ended up at UVA about three months after that. Debbie and I were new friends, as she said in 2017. And so when all of this happened overnight for me, I needed help. My husband had to go back to work, and I Needed someone to literally come help me go from the couch to the bathroom just to sit with me because I was so dizzy I couldn't get up on my own. And I felt pulled to Debbie. I've lived in this area for over 10 years at that point, and we say now that we were divinely connected. And I just felt pulled to her. So she graciously came anytime I called. You know, she's and still is my first responder, and I'm so grateful for that. But we went through some really intense stuff as new friends. And when I ended up at UVA and received my diagnosis, I called her on the way home and I said, you're never going to believe this. Like, I have Alpha Gal Syndrome. And everything I've been eating, everything I've been taking in a histamine wise medication, supplements, it all contained bovine and porcine ingredients so that, you know and I know Debbie was experiencing similar symptoms. So then she got tested and we got our diagnosis both within three months of each other. So we knew we had to do something at that point.

Caroline: What an incredible story. Seriously, how do you even meet each other with the same condition, not knowing it, and then going through all of these things to finally get diagnosed together? And then by the time you got diagnosed, you were already good friends, you already had trust and support and love. And that is an amazing story. I think it's so difficult to pinpoint Alpha Gal too, right? I mean, well, that's why you're doing what you're doing, actually, because of that. But, you know, as you're telling me the story, I'm like, how do you find the needle in the haystack stack?

Debbie: Yeah. I think that is a huge challenge to this because Alpha Gal Syndrome looks like so many other things, right? It looks like Lyme. It looks like, you know, early onset Alzheimer's. It looks like rheumatoid arthritis. It looks like all these things, which actually there are. There is research that shows the average time of diagnosis for a person with Alpha Gal Syndrome from the onset of symptoms is over seven years. Years. And so we're on a mission to change that.

Caroline: That's incredible. Seven years. Okay. So, Debbie, for those of us who might not be familiar with Alpha Gal Syndrome, can you briefly go into a little more detail and explain the condition and how it impacts a patient and their family's lives? And then, side note, for listeners, this conversation is going to be followed up with a podcast featuring Dr. Scott Commons, who is a researcher and physician at the University of North Carolina, who focuses specifically on Alpha Gal Syndrome.

Debbie: Yes, absolutely. And I'm so excited for your listeners to get to hear Dr. Cummins too, because he is just a brilliant mind in this space. So just to give you the very brief, you know, understanding of what Alpha Gal syndrome is, it is a tick induced allergy to a sugar, which is actually galactose, alpha 1, 3 galactose, but it's commonly known as Alpha Gal. And Alpha Gal is found in all mammals except for humans and some primates. So what happens is within weeks or months of a tick bite, and generally here in the United States, it's the bite of the Lone Star tick, A person can develop this potentially life threatening reaction to anything that contains the Alpha Gal sugar. So that can be red meat, you know, beef, like we've talked about, it can be pork and other red meats, but it also can be all the byproducts such as dairy and, you know, byproducts that are commonly found not just in our food, but also our pharmaceuticals and our everyday household and healthcare and beauty products. So we have to be careful about everything that we put in on and around our bodies. Because any of these symptoms, any of these ingredients can actually trigger symptoms. And symptoms can range from all the things that Candice and I just talked about that we described in our own experience, but also any other allergy symptoms that you can think of, we hear across the board. A really scary statistic that I like to point out because I think it drives home the point of the need for awareness and some change in this country is that as many as 75% of Alpha Gal patients have experienced anaphylaxis due to exposure. And one other thing to note when it comes to Alpha Gal syndrome is that typically symptoms have a delayed response. So where they can happen immediately, oftentimes they happen, you know, two to ten hours after exposure. So lots of people are waking up in the middle of the night with symptoms and not knowing what to connect it to.

Caroline: 10 hours. Wow, that is a long. So I assume you really have to educate the people around you so that they can help identify too, right? Because if you're sleeping or out shopping or something like that.

Debbie: Yes, absolutely. So this impacts not just those of us living with it, like you're saying, but everybody around us. You know, my husband was the one staying awake, making sure I wasn't going to die in my sleep. Like, I don't mean to be dramatic, but it, it is. So it's a very, very complicated, high impact condition. You know, going to the grocery store becomes this sort of dangerous guessing game because as of now, there's no law that requires labeling of alpha gallon packaging and lots of ingredients that are found in our food and our medicine and all those things, household products, makeup, they can have ingredients on them that can be either plant sourced or animal sourced. And there's no way of knowing without you on the phone for hours and trying to dig in to where these ingredients are being sourced from to see if they're safe for us.

Caroline: Earlier this morning I was on your website, which again, I love, love, love, and I saw the blog on pharmacy and I was like, oh, why are they talking about a pharmacy? So I clicked on it and started reading it and I was like, wow, it gave me such insight onto how complex this is. Because you were talking about gelatin being used in medications and how your pharmacist needs to know.

Debbie: Yes, I'll let Candice, you want to talk about the statistics of pharmaceuticals.

Candice: Yeah. So, you know, I think the pharmaceutical aspect of this is one of the really one of the most dangerous. If you don't have a pharmacy that's willing to dig in to these byproducts such as magnesium, steroid, glycerin, even various names for milk derived ingredients, you know, we really have to be our own detective. But if you don't have an advocate in your pharmacist, it's really, really difficult because manufacturing changes, ingredients change. I've even had that, the experience of calling a manufacturer myself and being redirected back to another department and was literally given the runaround with it. So it's really, really critical, I think, that we start to have transparency and labeling for our medical products, you know, because that goes beyond even our medications. It's heart valves and, you know, tissues that could be porcine derived. A lot of our medical products come from mammal derived organs and, you know, ingredients. It makes it very, very tricky for those of us with Alpha Gal Syndrome.

Caroline: Oh, yeah. My mind is spinning. I'm thinking, oh, my beloved Altoids would not work for you.

Candice: No, no, not because I think they contain gelatin. I believe they do.

Caroline: And so that's why you have me thinking about, oh, so when I see you at the FAACT Digital Influencer Summit coming up, I'm thinking, okay, so I need to be thoughtful about my little snacks in my purse because I am an old lady with snacks in my purse.

Debbie: Oh, we all have snacks in our purse. That's.

Caroline: I guess so when you're in this kind of realm. Right. This is what we do. But it just seems so complex because if you have an emergency and you go to the hospital, you have to convey that. So do you wear Medic Alert type jewelry or what do you do with that?

Candice: Yeah, we. We both. We both do have bracelets. I am. I need to wear it better than I do now, to be quite honest with you. But, yeah, we do have medical alert bracelets. And we also, you know, we have something that we can talk about in a little while. But in our food allergy mentorship program that Debbie and I created, we also have our first responder form. So we've made one of these also for the hospital. So we filled it out. We give it to what we call our first responder. I'm not necessarily talking about a paramedic, but our person that would be there with us to give to hospital staff to go kind of over the things that we need to be on the lookout for. I know for me personally, Debbie, you can jump in with this too, but that gives me a little bit more peace of mind, the medical alert bracelet, because I feel like some people, even our medical professionals, just do not have the knowledge of alpha gal syndrome and all that it entails.

Debbie: Yeah, I think one of the additional complications of living with this and as you know, in the allergy space, Caroline, that so many of our social activities also revolve around food. You know, it's not just what we're fixing in our homes or what we're eating out at restaurants, but it's also going to school functions and church gatherings and work meetings. You know, everything revolves around food. And so it really felt to Kansas and I, like, this was a much deeper issue that we had to address. I think the number one thing that we hear from, you know, this community that we're building, this community that's out there, is that people are lonely, people feel isolated. And so that became a huge part of why we started two alpha gals the way that we did. You know, we. We set up two alpha gals on four pillars. That was our idea. We. We start with survival, and then we talk about reinvention, resilience, and then ultimately moving to joy survival, which is a little darker. But the truth is, is we've got to learn how to live with this, right? We've got to learn how to live with this and so that we can move on to those other things, you know, but revenge, reinvention, and resilience to help others learn that you really can return to a place of joy. It may not look exactly like it did before. There are things that I did before that I wouldn't do now, and I think Candice would agree with that. But in some ways it's even better. And we've become so proud of this community that we've built. As the AGS community continues to grow at an alarming rate, we have got to raise awareness so that we can help other people. We don't want more people to have Alpha Gal Syndrome, but people who are already suffering, we want them to find some relief. So we continue to, you know, offer tips and tricks and our resource guides and our podcast and our food allergy mentorship program too.

Caroline: Well, this is incredible. So you've built this amazing community, you know, that I've seen. But for listeners, can you talk to them just kind of briefly about if they suspect they have Alpha Gal or they've been diagnosed? Right. How do they engage with this community that you've built? Like, like what are they going to find on the website? Like, how are they going to find each other? Because this is amazing.

Candice: So, you know, we, we built our website to first and foremost be a welcoming space, you know, when Debbie and I were diagnosed. And like she said, you feel very isolated, you feel very alone. It's very overwhelming. And we wanted people to have a place that they could land, that they know they are not in this alone. So we have, you know, we have some recipes, we have blog articles, we have, you know, great resources, very easily digestible and printable resources on our website. And then we've also built a social media platform so you can find us on Facebook, on Instagram. We love to interact with people. We get questions all the time about products. Debbie and I created a really fun series called the Gals Go Shopping. So you might see us on the aisles in Target showing like these sneaky sources of mammal derived ingredients and where they might hide. And so we really, we try to give a glimpse into our everyday life, but also sharing information, true information about how to navigate this lifestyle safely and with joy. You know, we just always want to bring it back to that. So we've been very intentional with creating a welcoming space, not only in the content that we put out, but the colors that you see, you know, it's, it's very. Everything that we do is very intentional in building that community.

Caroline: So, Candaice, staying focused on the social media engagement, what platforms are you on and how can people follow you and listeners. I will put the links in the show notes too, but if you could just touch a little more on social media and how people can find and follow you.

Debbie: Sure.

Candice: So we are on all social media platforms. You can find us across Facebook, Instagram, X LinkedIn, all of the social media platforms. We are at two alpha gals, and that's two alpha gals, I will say. So I run our social media account. At the moment. I am the best on Instagram and then we, you know, are also very active on Facebook. I try to be, I'm trying to be better on the other platforms, but you can find us across all of them at two Alpha Gals. We also have our podcast, which I know is not probably technically social, but that's in the tall grass with two Alpha Gals. So if you want to hear some more insight into, you know, guests and their stories, and we really highlight stories of resilience and some amazing brands and it's. We have a great time doing our podcast too. So reach out, direct message us. You'll get me. So I will respond. You know, we love engagement. We love hearing how people are doing, you know, their own personal stories and any sort of questions that people have. We, we love hearing questions.

Caroline: And this is why you're building such an amazing community. You've just kind of opened up everything and so it's accessible to all in this really wonderful, warm format. I just love this. So now, Debbie, I'm going to turn to you. Can we Explore the Alpha Gal 101 resource guide? I saw it on your website and just blown away. So I would love for you to discuss how a patient or caregiver can tackle overwhelm or medical appointments. You just mentioned, you know, emergencies and your personal first responders. But then also going to the ER since I believe AGS is still considered rare. And I'm going to turn to you for more information, but I believe that's where we are. I assume that finding the right health care could be really challenging as I relate this to food allergies. Like over 20 years ago when literally I would go to the pediatrician appointment with research papers in hand saying, look, here's this, here's this. And my doctor loved it, by the way. And then eventually we found an allergist and he would turn to me in the appointment and say, what does your allergist say? If you have any information, send it over. So if you don't mind going into detail on this resource guide.

Debbie: Yes, thank you so much for asking. And you know, the funny thing is, Caroline, is that everyone is calling it rare. We see that everywhere. But the truth is that it actually really isn't anymore, which is crazy to think about. So last summer in the summer, July of 2023, the CDC came out with a report that estimated that they believe nearly a half a million people in the United States are living with this. And in all honesty, we think that's probably a drastic underestimate on its own. So going back to your question about healthcare, I'm going to refer back to that same study that came out by the cdc. Despite these numbers that we have at this point, that survey, you know, uncovered that 42% of healthcare providers who had been surveyed in this study had never even heard of alpha gal syndrome.

Caroline: 42%.

Debbie: And then on top of that, another 35% weren't confident in their ability to diagnose or manage their patients living with it. And you know, to give you a personal example, when I got my own diagnosis, the nurse called and she told me that I had Alpha Gal syndrome. She said, okay, you have Alpha Gal, don't eat beef. And then we hung up the phone. So, you know, we had to figure out on our own and often the hard way that there are there, you know, this is so much deeper than that. And you know, we're, I'm so grateful that Candice had already had her experience with dealing with a wheat allergy and sesame and barley and rye, that she was already sort of aware that that wasn't going to be the end all, be all when we were told don't eat beef. And so we, we dove into this head first. So we created the resource guide to help these newly diagnosed patients who were overwhelmed coming out of their doctor's office. We wanted to give them something that would help them navigate this lifestyle a little easier. It's just the basics. It's about 22 pages and we tried to break it down and just really sort of digestible and easy to understand and pieces of information. We just really wanted to give people living with this, our community, a leg up to help them avoid some of the pitfalls that we had experienced along the way. And I am all for bringing journal articles to my doctor already. They always seem to appreciate it or bring it to them still. They always do seem to appreciate it. And I know Candice had mentioned briefly we have some downloadable resources. We also have a really simple one page document that breaks down the basics of Alpha Gal syndrome. It's free to download on our website. We encourage anybody who suspects that they have this or does have it and wants to educate the healthcare providers further to just print this out and bring it to their doctor. Print it out and offer it to your other doctors, your other Specialists, we're not going to be able to raise awareness on of this on our own and so we just really encourage other people to join in the effort.

Candice: Caroline, I was going to add too to that. You know, we have our one on one resource guide and our kitchen guide so that one kind of goes more in depth into kitchen, you know, clean out pantry, clean out, how to host in Alpha Gal. So we're really big on also providing information for anyone caring for a loved one with Alpha Gal Syndrome. And then to take it a step further, we also created our food allergy mentorship program which is a six week course that Debbie and I work two on one with our mentees that either again have been diagnosed with Alpha Gal or caring for someone with Alpha Gal Syndrome. And we, we go through kind of those foundational basics of, you know, helping move people out of survival into joy. And we tackle the first responder basics, building out your toolkit, really getting their safety plan in place all the way to, you know, food product swap outs and then ultimately, you know, self advocacy, speaking to providers, family. We touch on nurturing your mental health and self compassion all the way to adventure, getting back out, traveling. We really, really, really love this program and we wanted to fill a gap and we saw this need to bridge, you know, the gap between healthcare and human care. So that was where the food allergy mentorship program came from.

Caroline: Well, it seems like it's so critical too, like you said, to bridge that gap. So you have this medical technical information, right? Or you've been given the orders to avoid everything, you know, mammal related, but now what? Right? Like how do we make it happen? And then like you said, as a caregiver or a spouse or a good friend or anything, how do we tackle that? So it seems like we could go to your website and we could find these resources, we could find you two to help us bridge that pragmatic, I guess, behavior right from diagnosis to joy. And I love how joy is your theme and adventure. It's so positive and uplifting and I just adore that. And so it seems like it's a one stop shop over there.

Candice: We've tried. We have tried. You know, I think that's the thing, like Debbie and I were huge foodies and travelers and we didn't want to give up the things that we loved. We just had to do things differently. So we want to be, you know, we want to empower others to do the same. You don't have to, you know, live in a state of suffering. So that's that's our mission.

Caroline: Such a good attitude. So now, recently, we learned some really exciting news that you two have created and launched the Alpha Gal Foundation. So, Candice, can you explain what are the goals of this foundation? The hopes, your dreams? Like, what's going to happen now?

Candice: Yes. So really, you know, when Debbie and I were. We got. We were asked last year to be a part of some legislative efforts here in Virginia. And you know, very proudly, I think we. We can say that the bill, HB93, was passed here in Virginia to make Alpha Gal a reportable. A mandatory reportable cond. So that was a huge step. And then recently, there's now a federal bill that was also put forward to make Alpha Gal one of the top food allergens. So we're making huge strides in. In this way. When we started this, we never thought we would step into legislation, honestly, so. But there was a need and we. We got really uncomfortable and we did the thing, and it has been an amazing, you know, journey. But we knew that we also wanted more accessibility for people living with this with our food allergy mentorship program. So we. We built the Alpha Gal Foundation on the principles of engagement, you know, all around conversation, education, and empowerment. So those are our big goals with this, to be able to educate not only the public, but healthcare providers, anyone living with Alpha Gal syndrome, anyone, again, caring for someone with Alpha Gal Syndrome and empower those living with it. And ultimately, really, to start with, to start the conversation, we need more conversation, more awareness. So we have some really big goals with this. And Debbie, am I leaving anything out?

Debbie: I think you covered the most important.

Candice: Things, so we're really excited. You know, this is a new. A new venture for us, but I think it's going to open a lot of doors so that we can help more people. And we just can't wait to see how it all unfolds.

Caroline: Well, this is absolutely thrilling for us to witness the beginnings, but it is so critical. Just sidestep here a little bit. So 21 years ago, I started a food allergy support group in Reno, and the first advice I'd received was become a nonprofit. So then that way the medical community and everyone will take you seriously. And then I got involved in legislation and passing bills and policy in schools and stuff. And so I know the power of what you are doing because it changes the game. And it was probably the best piece of advice I had ever received, because as soon as you are a nonprofit, especially you as a foundation, you're taken seriously immediately. And so many doors now open up. So this is really exciting to be here, you know, at ground zero to see where you are. I can't wait to see, like, even two years from now where you're going to be at. I think you're going to be pleasantly surprised.

Debbie: Thank you so much.

Caroline: I could talk to you all day long, but we actually can't. So before we wrap, before we wrap up, up today, I want to ask each of you, is there anything else you would like listeners to hear? So, Debbie, shall we start with you? Is there any parting words of wisdom you would like to share with our listeners or anything we missed?

Debbie: Oh, sure. There's always more to talk about, right? And thank you so much for this opportunity to be able to share some of this. I think I would just like to go back to what Candice mentioned just a minute ago about the new bill. That's the new federal bill that's been introduced actually by Representative Andrew out of New Jersey. That, that would add Alpha Gal to the list of major allergens. If you're looking for a way to help, you know, you can urge your member of the U.S. house of Representatives to co sponsor this bill. There was a really super easy form that was created by our friends over at Alpha Gal Alliance Action Fund. Takes like one or two minutes. It's, you know, a form that you can just fill in and it automatically goes to your representative. So representatives track the number. I know you know this, Caroline. And working in this space, they track the number of emails they receive. So this is actually a really great way to make your voice heard and counted have an impact.

Caroline: And for those of us who don't deal with Alpha Gal, this is our opportunity to support you because you are part of our family. So, listeners, hello. I'll make sure we have the links for that, Candace.

Candice: Okay, so I'll just add on a little bit to what Debbie just said. Never underestimate the power of your story. So. So the reason that the bill was actually introduced by Van Drew's office is because one of his constituents reached out and shared their story of living with Alpha Gal syndrome. So one thing Debbie and I always tell ourselves is that we can do hard things. So, listeners, you can do hard things and never underestimate the power of your own story. So that is what I would like to leave it with.

Caroline: Well, those are fantastic words of wisdom and advice. I appreciate both of you spending time with us today. I know you're incredibly busy. You just launched this foundation. You have a lot going on and travel and conferences and so forth. So I just really appreciate you taking the time to educate us and spend time with us. I look forward to meeting you in person finally. Yay. And so that's exciting. But thank you each so much for being here.

Debbie: Oh, thank you so much for welcoming us into your family, this family of, you know, food allergies. We're so grateful for the people that we've met, you know, having a platform to speak about Alpha Gal Syndrome. You know, you really are helping us amplify the conversation around it. So thank you so much for having us here.

Candice: Thank you so much, Caroline. This has been a wonderful, wonderful conversation.

Caroline: Well, you're absolutely welcome, and it is our pleasure. Thank you for listening to FAACT's roundtable podcast. Stay tuned for future episodes coming soon. Please subscribe, leave a review and listen to our podcast on Pandora, Apple Podcasts, Spotify, iHeartRadio and Stitcher. Have a great day and always be kind to one another.