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It’s time to give a platform, or in my case “runway,” to people with rare disease

Our Motivation | April 4, 2022

Kendra Gottsleben is a rare disease advocate living with MPS VI and is the founder of the non-profit Rare by Design.

 
Fashion has always been a part of me. In fact, when I was only two weeks old, my family took me on my first shopping spree. But despite my serious love of sparkles, fashion has also been one of my greatest challenges. Living with MPS VI, it is a scavenger hunt to not only find the right sizes, but also clothing that is adaptable to my motor skills, which make things like buttons and zippers impossible. And unfortunately, in today’s culture, adaptability isn’t something that is top of mind for most clothing brands or stores. That’s why I’m bringing the first NYC-style fashion show to the Midwest in May, which will give a runway to people of all abilities and sizes, including those living with rare diseases.

Finding My Inspiration

Everyone who knows me knows that I love to make lemonade out of lemons. I’ve turned my countless frustrating shopping trips into a platform to raise awareness of the importance of inclusion and representation. That passion has even landed me on the runway of a New York City fashion show with Tommy Hilfiger and the Runway of Dreams Foundation. Being a small-town South Dakota girl in the Big Apple, I’d never felt the thrill of such a large-scale event celebrating bodies of different shapes and sizes. It left me so inspired that I knew I had to bring that feeling and message to the Midwest.

Adaptive Clothing Key Features

For many years, the idea remained a dream as I navigated the demands of life as a busy young professional. Then, in 2020, my life flashed before my eyes as I underwent open heart surgery, an incredibly risky procedure for anyone, but even more so for someone with a rare disease. When I woke up from surgery, I heard the voice of my grandmother, who had recently passed and shared my love of fashion as a seamstress, telling me that I couldn’t wait any longer. Life is short and there is no better time than now.

Making My Dreams A Reality

I started by founding a non-profit organization called Rare by Design. Our mission is to celebrate the rare that makes us unique and extraordinary. We strive to assist individuals with rare diseases and disabilities, along with their families, in creating awareness of inclusion, representation and living life positively. Rare by Design is dedicated to outreach, education, and engagement of stakeholders within the community of those with all disabilities and rare diseases.

So, can you guess what our first event will be? That’s right – on May 7, 2022, we will put Sioux Falls on the fashion map with a NYC-style fashion show – with my own special twist, of course! “The Style Show: A Runway to Empower” will feature models of varied abilities, ages, genders (LGBTQIA), races and diverse body types. All proceeds from the event will benefit the local non-profit Breathe Bravely, an organization dedicated to giving voice to people with the rare disease Cystic Fibrosis.

Empowering and Celebrating True Diversity

The first goal of the event is to demonstrate what true diversity can look like. So often when the word diversity is discussed, people with disabilities or rare diseases are not included. Individuals with disabilities are the largest minority group because a person can be both a minority and have a disability/rare disease. Rare by Design hopes that fashion show attendees see the importance of how true representation matters in all aspects of life, from TV shows and commercials to board rooms and businesses.

Another aim of the event is to showcase how clothing can empower people of all abilities and diverse body types with confidence and style – and local businesses can play key roles in doing so. The clothing the models will wear comes from local boutiques and stores in South Dakota. I want the stores to not only realize that there is a market for adaptable clothing, but also see how important accessibility is to the shopping experience – from parking to navigating the store with a wheelchair or walker.

Stay Tuned for More!

Rare beauty is stitched within each of us and sewn within each cell. No matter how we strut down the runway, it's the beauty and rarity composed within each of us that makes us each breathtakingly beautiful. I look forward to taking my BioMarin family on this journey, so stay tuned for more! In my next blog, I’ll fill you in on the planning process, including everything from finding boutiques and models to a venue fit for more than 200 attendees. To learn more, or purchase tickets, you can visit my event page!