'Everyone leaves empowered': Event creator shows disabilities in a positive light
When Kendra Gottsleben was growing up, she wore dresses made by her grandmother.
Many grandmothers care for their grandchildren this way, but Gottsleben was born with Maroteaux-Lamy syndrome, a rare genetic disorder that affects fine motor difficulties and can cause skeletal abnormalities or cardiac problems. Her family's effort to sew clothing that was easy for her to put on was providing her an essential need that generally could not be found elsewhere.
Gottsleben’s grandmother died in 2020, but today her kindness lives on in Rare by Design, a nonprofit organization founded by Gottsleben that each year hosts a fashion show in the spring and a film festival in the fall to “celebrate the rare that makes us unique” and empower minority communities through fashion, arts and events.
Earlier this month, Gottsleben hosted her fourth annual Style Show: A Runway to Empower -- her largest yet -- to a sold-out crowd of nearly 300 guests, an ever-growing event that will move to the Sioux Falls Convention Center next year. Now she has begun planning for her efforts to expand even more as she prepares for her second annual film festival in September at the Sioux Falls State Theatre.
“This is a true representation of people with disabilities and rare diseases,” Gottsleben said. “If you aren’t exposed to people with disabilities, you don’t know what you don’t know, but we are amazing people! We do good things for our communities, and we belong in every single space. Whether or not you have a disability, we’re here to celebrate beauty in every form, and everyone always leaves the style show empowered.”
From New York to a pink carpet in Sioux Falls
Gottsleben was first introduced to the idea of adaptive clothing when she modeled in 2016 for Runway of Dreams, a nationwide organization from New Jersey that equally works to advance disability inclusion through fashion and has participated for many years in New York Fashion Week.
With no prior experience in modeling, Gottsleben flew to New York City and wore an outfit styled by Tommy Hilfiger that was adaptable to her needs. She smiled for big names in the audience like Neiman Marcus and modeled alongside other adaptive clothing lines from JCPenney, Steve Madden, Target, Victoria’s Secret and Adidas.
“The feeling I had as a model and to be on the runway and then feeding off the energy of the event, I knew I wanted to do something like that in South Dakota,” said Gottsleben, who also works full time as the marketing communications specialist for the Center for Disabilities at University of South Dakota’s Sanford School of Medicine.
Her first Rare by Design Style Show was in 2022, when she partnered with The Event Company founder Addie Graham-Kramer to design a show that would introduce her dreams of an inclusive platform and would show an audience “all the possibilities and capabilities we have” in a positive light.
“It’s a learning opportunity for the community,” Gottsleben said. “We have had to adapt our whole life and innovate on how we want to accomplish things, but that doesn’t mean it isn’t possible. I want to help businesses, restaurants and boutiques understand that if you also innovate or adapt so everybody can belong, you have a customer for life because it’s otherwise hard to find businesses like that.”
This year, Gottsleben welcomed 32 models, ages 4 to 72, on a bright pink carpet to showcase 16 boutiques in Sioux Falls. These models spent the day together, had their hair and makeup done for the show and got to network together over lunch and fittings before “the champagne entrance and to the final strut.”
“I really love what Kendra is doing,” said 19-year-old model Cara McGary, a South Dakota State University nursing student who was born deaf in both ears and wears a cochlear implant. “She is making such a big impact in helping people with disabilities and rare diseases feel more comfortable in who they are.”
The Event Co.’s director of events Krista Vandersnick said working with Gottsleben through the years has empowered her in their own event planning to always think about accessibility and accommodations for guests.
“I truly feel like a partner in Kendra’s mission,” Vandersnick said. “I have learned so much about the community she brings together. This is truly inclusion for all.”
Similar reporting: Fun & Friends hosts resource expo in Sioux Falls for individuals with disabilities.
ADA film festival coming this fall
Gottsleben’s fashion show is only half the work. She is on many advisory groups statewide and helps with the Levitt’s annual ADA Festival, celebrating this year on July 26 the 35th anniversary of the Americans with Disabilities Act. Gottsleben has been on the TEDx stage twice, written three children’s books and supported the South Dakota Governors Board of Vocational Rehabilitation as well as the Sioux Falls Disability Awareness Commission.
“I create a space for people to learn more about rare diseases,” Gottsleben said.
While a disability is a physical or mental condition that might make for functional limitations, a rare disease is a medical condition that only affects 1 in 10 Americans. Gottsleben has both.
As part of Rare by Design, the second annual film festival invites people of all abilities to celebrate anyone behind the camera or actors on film who also have a physical or developmental disability, like actress Marissa Bode, who played a character in “Wicked” that uses a wheelchair but also does in real life.
Last year, Gottsleben had more than 400 submissions within two weeks, only 11 of which she screened for 100 attendees at the Sioux Falls State Theatre. This year’s event will be in September, and submissions will be accepted in June.
“I’m a person who loves to give experiences to people,” Gottsleben said. “That night of the style show, I love being in the back of the room, watching audience reactions and watching the models smiling. It makes me feel so blessed and so proud of how things have been going. I can’t wait to do more.”
