Cedar Rapids teen, ‘Rare Artist’ advocates for rare disease awareness

CEDAR RAPIDS, Iowa (KCRG) - A Cedar Rapids teenager is one of 10 winners from across the country of a Rare Artist Award, a prize that goes to artists with rare diseases.

Rylie Erbacher, 14, described her prize-winning piece, “Colors of Courage.”

“It’s a lion I made with chalk pastels. It’s very colorful,” Rylie said. “It doesn’t look, necessarily, like a real lion because of all the colors. But they represent the courage it takes to have a rare disease and all of the strength.”

Rylie has Spinal Muscular Atrophy which affects one out of 10,000 people.

“I’ve had multiple surgeries, and I’m going to have another one. And that can be really scary. And there’s also the aspect of having to, like, talk to people about certain issues and make sure that my needs are met, in ways that not everyone has to deal with,” Rylie said.

Rylie is also taking the first and only at-home treatment for SMA. Data presented at the MDA Conference in March shows Evrysdi is helping to stabilize or improve her motor function.

As one of the winners of the Rare Artist Award, Rylie got to travel to Washington D.C. at the beginning of March, where her artwork was on display for Rare Disease Week on Capitol Hill. She and her family also got to speak to lawmakers about changes they’d like to see.

“Explaining, like in Rylie’s case, how all of these different things like, you know, accessible air travel and things like that, newborn screening— why they’re important to us because of her diagnosis,” Stephanie Erbacher, Rylie’s mother, said.

Both Rylie and her mom Stephanie said advocacy work is especially important when the disease isn’t one that affects as many people or is as well-researched as some other conditions.

“Not everyone, you know, not everyone has ever heard of them, or would ever hear of them,” Stephanie said.

Stephanie and Rylie said telling their family’s story —whether that’s a conversation with a senator or through Rylie’s artwork—is critical to making the world a place that works better for everyone.

“It’s really important for people to advocate for diseases. It can be scary sometimes, and hard to express these emotions and all of the things we have to go through. But it’s really important to spread awareness about rare diseases, to make sure that the world is more accessible for everyone,” Rylie said.

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