When Madison Beetson, senior, discovered that she would be competing in her first pageant as a representative for Munster in Miss Teen Indiana, she immediately knew she had a long road of work ahead of her. Despite never competing in a pageant before, she was eager to participate in the rigorous selection process.

“When most people hear the word pageant they think about beauty, being the skinniest you can be and having perfect teeth and skin,” Madison said. “It is so far from that. You have to put time into things, you have to get photos done and you have to interview with people. They try to find the best girl to represent Indiana in every aspect.”

With only three months to prepare, her time has been monopolized by meetings with sponsors, photoshoots and volunteer work. Most important to Madison, however, has been the time she dedicates to advocating for rare diseases. Diagnosed with autoimmune hepatitis in 2012, a rare, treatable liver disease, she hopes to spread awareness to the silent struggles those with rare diseases face.

“It’s just frustrating because nobody really knows about this disease,” Madison said. “So I understand the frustration of other parents that have to deal with this. Not just (with) finding treatments, but (getting) accommodations in school. A lot do, but some teachers just don’t think it’s a real thing. I want to advocate for other people who may not be able to say the things that I can say.”

Though her entire campaign has incorporated advocacy for rare diseases, Madison has used February, rare disease month, especially as a time to spread awareness—this includes meeting with children with rare diseases. After a particular period of struggle during quarantine in which she underwent chemotherapy, she hopes to use the platform given to her by pageantry to start fundraisers and an educational organization for children and families of children with rare diseases.

“Over the past two years, my health declined and I was put in the hospital every other month,” Madison said. “We went through about six of the medications before chemotherapy. I do want to start an organization that’s either educating other people about rare diseases, or start another fundraiser to go towards the National Organization of Rare Diseases.”

Madison’s journey is far from over. Though she has not yet competed in the pageant, Madison says she has already fulfilled a much more profound goal already.

“I think that people who have been doing (pageants) longer definitely have a step above me, just because they understand things, but I think it’s going to help me become a more confident person,” Madison said. “I just want people to know that I didn’t go into this hoping for a win, I’m going into this hoping to spread awareness about something that I’ve struggled with and that I understand some of the worst sides of it. I’m going to help raise awareness about something that means a lot to me.”