National Women’s Month Feature: Q&A with LivLyme Founder Olivia Goodreau
In celebration of National Women’s Month, Coforma is showcasing exceptional women who have made a difference through their work and are opening the door for others. In this special installment, we’re delighted to feature Olivia Goodreau, who founded the LivLyme Foundation at 12 years old and has since become an advocate, collaborator, and innovator for Lyme disease. Olivia, now 16, answered questions about how her Lyme journey led her to founding LivLyme, how her TickTracker app impacts Lyme, and what she’s learned about change-making along the way.
You have had a long and difficult experience with Lyme disease, beginning at age six. At age 12, you started the LivLyme Foundation to defeat Lyme and support children and families struggling with the disease. From your perspective, what is the most critical need in the fight against Lyme disease?
I believe that the most important thing we need in this battle against tick-borne diseases is to bring both awareness and hope. Not only do people, with or without connections to the cause, need to be well informed about Lyme disease, but they also need to have hope that things will get better. Both are vital in order to do something about this issue.
Your story of survival, advocacy, and leadership is admirable. What are you most proud of today?
I’m proud of myself for doing something to help the community. I’m proud that I was able to reach out and help so many people, even talking to them was such a huge accomplishment for me. I will always be proud of my foundation and app, but my biggest accomplishment, in my opinion, is the fact that I was able to meet and help the other incredible people who are helping the Lyme community. I got to see them make history, and give hope to those who weren’t able to be by their sides. I often compare it to a team of superheroes, because that’s exactly what they are. And I am very proud that I was able to speak to them, work alongside them, and help people with them.
Your Foundation recently released an app called TickTracker that lets people track and report ticks in real-time using geolocation. TickTracker also serves as an educational tool, with information about ticks, tick-borne diseases, tick removal, and other resources. How is data from the app currently being used, and how will it be used in the future?
The data that we have been receiving from TickTracker has been astounding. In the near future, TickTracker will be able to predict tick outbreaks, cycles, migration, new tick species, and how seasons and weather affect ticks. While we gain more information on those topics, our data is helping users get a good look into their safety, wherever they may be. Every little tick pinpoint is used to help the community, so by tracking a tick, you could be protecting someone else. We have an option to take a picture of the ticks and soon we are hoping to have an AI from Microsoft to help identify which species of tick is in the photo. I am very excited to see what the future will hold for this app, and how it will help society.
What was it like to transition from being advocated for by your parents to advocating for yourself?
It was a very relieving and empowering experience for me. I learned how to use my voice while speaking to doctors, feeling a weight come off of my shoulders as I used my own voice. I think it was the first real time I started my journey of being an activist, starting out with my own health then moving on to others. I was able to take a step back and see how many kids cannot talk for themselves, some having a fear of speaking out. Once you get over that fear, you definitely feel more confident about yourself and your decisions. And once I had learned how to advocate for myself, I haven’t stopped since.
What do people get wrong about you?
People often underestimate the knowledge and maturity kids can have. I was often looked down on, being told, “You shouldn’t have to do this, you’re a kid.” However, the fact that I, a 12-year-old [at the time], was in the same room as those adults does say a lot. Age, maturity, and experience are not the same. I don’t think many adults realize that some kids can be just as mature, or even more mature, than them. I don’t think children should have to go to Congress and work for an issue that adults should have already fixed, but we do. We realize that sometimes, grownups can’t do it alone. And I always get happy when I see my generation help out causes that are way bigger than themselves. We want to fix the world so we can have a better future, not wait until it’s so bad that there’s no hope left.
You’ve made a difference for people living with Lyme through your Foundation, research support, advocacy, and now the TickTracker app. What advice would you give to others who see a problem that needs to be addressed?
Don’t wait for someone else to do it for you. If you really want to change the world and solve an issue, you will. And for those like me, who shouldn’t have been dragged into a problem at a young age: you’re never too young to make a difference.
