Youth Voices Driving Alpha-gal Awareness
- Jasmine Uchi, PharmD
- 2 hours ago
- 7 min read
Meet Andrea (A) and Peyton (P), two passionate high school advocates turning personal experiences and purpose into meaningful action for the alpha-gal syndrome community. Through their involvement with K12 Allergies and the FARE Teen Advisory Group, they are helping lead the Gift Bags for Alpha-gal Patients project and raising awareness for a condition that often goes unseen. In this interview, they share their journeys, what inspires their advocacy, and how teens can make a powerful impact in their communities.
Can you introduce yourself and share how you first got involved with the FARE Teen Advisory Group/K12 Allergies?
A: Hi! My name is Andrea and I'm from Fayetteville, AR, and part of K12 Allergies. I first got involved a few years ago after learning that one of my friends founded the nonprofit. I thought the work that she was doing was super meaningful and reached out to her. I started by mainly creating weekly social media posts; now, I also help lead service projects, such as the Gift Bags for Alpha-gal Patients and local allergy awareness events.
P: My name is Peyton. I am from outside of Nashville, TN. I was diagnosed with alpha-gal syndrome (AGS) in 2022 and, wanting to turn my diagnosis into something positive, I got involved with AGS advocacy in 2024 by working with Debbie Nichols and Candice Matthis at Two Alpha Gals to create a corner for teens and share my perspective on their podcast. This eventually led to me joining the Food Allergy Research and Education (FARE) Teen Advisory Group where I got involved with K12Allergies and the Gift Bags for Alpha-gal Patients project.
What inspired you to focus on alpha-gal syndrome awareness and support?
A: Before joining K12 Allergies, I had never even heard of alpha-gal, so I knew that there was very little awareness about it. Since AGS is caused by tick bites, I feel prevention is especially important, and I wanted to highlight that while raising awareness. In other words, I wanted to be part of an effort that provides education, resources, and encouragement for people who will live with AGS for the rest of their lives.
P: I think it is really important to keep AGS in the conversation in food allergy spaces. That, of course, includes the doctor’s office. I hope that this project, in addition to supporting patients, will help raise awareness. You never know which doctor you reach out to has never heard (or heard very little) about AGS and researches it as a result.
How would you describe the gift bag project to someone who’s never heard of it?
A: The gift bag project is an effort to support those affected with AGS. Usually we start a batch by reaching out to companies and vendors who have safe alpha-gal products, and requesting donations. Then, when the donations arrive, we assemble the bags and drop them off at clinics, where they are handed out to patients. It is a great way for patients to learn more about their condition and brands that have great snacks that are safe for them.
P: The name of this project is Gift Bags for Alpha-gal Patients. We partner with doctors, clinics, nonprofits, and businesses to bring resources directly to AGS patients in the clinics and hospitals where they are being diagnosed.
What kinds of items go into the bags, and how do you decide what to include?
A: The bags usually include a mix of educational and fun items. On the informational side, we add brochures, cards, and pamphlets with facts and resources about AGS. For snacks, we include things like gummy bears, chocolates, candy, and other treats from trusted AGS-safe brands. We also add items such as bracelets, stickers, and even tick-repellent socks. Our goal is to provide patients with information about the condition while also introducing them to safe, enjoyable products they can trust.
P: Originally, we were planning on mostly just including AGS-safe snacks. As I started thinking back to my own diagnosis, however, I realized how important it would be to include other resources. It took my family and me far too long to find life-changing resources like Pill Clarity. Additionally, I left my initial allergist appointment totally lost as to what I could eat, what my reactions would look like, etc. To ensure that these patients are better prepared to handle their initial weeks with their AGS diagnosis, we include printouts from Alpha-gal Information that give a brief, but comprehensive, overview of AGS and what to expect as a patient. Our full list of products and resources changes every batch, but in the past we have worked with organizations and companies like Two Alpha Gals, Alpha-gal Information, Red Sneakers for Oakley, Equal Eats, Insect Shield, That’s It, Vegobears, Undercover Snacks, and Abe’s Muffins.
Why did you feel it was important to provide resources like brochures to patients newly diagnosed with AGS?
A: AGS, like any other condition, is very overwhelming and we wanted people to know that there are multiple resources out there for them. Having access to brochures and pamphlets right away helps them understand their condition and points them to places where they can find support. We want each person to feel informed and encouraged in his or her journey.
What has been the most rewarding part of putting these gift bags together?
P: To me, the most rewarding part is knowing that the patients who receive the bags are going to be far more prepared to handle their diagnosis than I was, and therefore be much safer as they begin to navigate life with AGS.
How has collaborating with other teens shaped this project?
A: Collaborating with other teens has really made me understand and appreciate the value of a team. I would not have been able to do something like this by myself, and their help and encouragement have made our plans a reality. I’ve also realized that people my age can truly lead and implement meaningful initiatives in our communities, and I’m so glad to have such a great group to work with!
P: We have a group of teen volunteers who all put so much work into this project. The best part about working with other teens is that we are able to bounce ideas off of each other in a collaborative, but productive space. For example, I am the only one who has AGS so am able to flag some ingredients and get companies involved that I know from personal experience are beneficial to people with AGS, but Hemali and Andrea know more about the logistical side of the project, since they have worked in the nonprofit space for longer. We each have our own strengths that work together really well.
What do you hope patients feel when they receive these gift bags?
A: I hope patients feel seen, supported, and even excited. I wish that they find new brands that they enjoy and realize that there are many resources out there to help. My hope is that the bags remind them they’re not alone and that there’s a community that cares about their journey.
P: First off, I hope they feel seen. It can often be difficult to have AGS because, even though it is a food allergy, it doesn’t always fit very well into food allergy (or even tick-borne illness) spaces. Very rarely do AGS patients have something created specifically for them, so I hope they appreciate a bag tailored to help them manage the nuances of their allergy -- delayed reaction time, tick bites, hidden ingredients, etc. Additionally, any major health diagnosis can be overwhelming and scary, so I hope that they also feel a sense of peace that comes with being educated about their allergy and prepared to navigate it.
What message would you like to share with other young people who want to make a difference in their communities?
A: I would say first find a cause that is important to you, then join someone or create your own initiative! You don’t have to wait until you’re older to make an impact; you can begin right now. It’s amazing how meaningful it feels to help others in your own community.
P: There are always projects that need helping hands. If you are specifically interested in getting involved with the food allergy community, the FARE Teen Advisory Group is a great place to start. Otherwise, look online at volunteer connector sites or, if there is an organization that you are specifically interested in getting involved with, don’t be shy to shoot them an email. More often than not, there is an opportunity available, regardless of your age.
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