How a nonprofit is using fashion to raise awareness of disabilities, rare diseases

Megan Raposa -

Simplified: Kendra Gottsleben wants people in Sioux Falls to see what diversity can look like when it includes people with disabilities and rare diseases. That's the goal behind the inaugural Style Show hosted by her new nonprofit, Rare by Design.

Why it matters

  • Often, when people talk about diversity and inclusion, people with disabilities or rare diseases are left out of the conversation, Gottsleben said. She also noted that people with disabilities make up the largest minority group.
  • Rare by Design aims to bring more awareness to the importance of including people with disabilities everywhere from board rooms to runways to anywhere else where conversations about the need for diversity are happening.
  • The inaugural Style Show – happening May 7 – creates space for these conversations to start in a fun environment.
  • The show is also an opportunity for Rare by Design to give back to another local nonprofit, Breathe Bravely, an organization focused on building community among people impacted by cystic fibrosis.
"Ultimately the mission for Rare by Design is celebrating the rare that makes us unique and extraordinary – owning who we are no matter what," Gottsleben said.

Tell me more about Gottsleben

Gottsleben's inspiration to start Rare by Design dates as far back as her childhood.

  • She has a rare disease, herself, and its impact on her fine motor skills meant clothing items could be tricky to maneuver.
  • To help her out, her grandmother used to sew custom clothing for her.

Fast-forward to around 2015, when Gottsleben became connected with a New Jersey nonprofit called "Runway of Dreams."

  • She was invited to be a model in their first-ever fashion show in New York, in which all of the models were people with disabilities or rare diseases.
"You could just feel the energy, the excitement," Gottsleben said. "When I was doing that, I was like, Sioux Falls, South Dakota – they need to experience this."

Enter Rare by Design.

The idea for Rare by Design was planted in Gottsleben's mind, but it wasn't until 2020 that she realized she needed to do this now.

  • Her grandmother died in February 2020, and six months later, Gottsleben had open-heart surgery.
"I was just like, I'm not wasting any more time," she said. "I was still in the ICU, and I was like, I want to do this."

What happens next?

Gottsleben has big dreams for the nonprofit, including finding ways to regional host meet-ups for people with rare diseases or disabilities, but it all starts with the organization's first event, the Style Show.

She's got 17 models lined up for the fashion show event, which will take place 5:30 p.m. to 10 p.m. May 7 at the Hilton Garden Inn downtown.

Funds raised at the show will go to support Breathe Bravely.