It’s Time to Give a Platform, or in My Case “Runway,” to People with Rare Disease
2022年4月4日
作者:Kendra Gottlesben
稀有设计的创始人
时尚一直是我的一部分. 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. 与MPS VI一起生活, 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. 不幸的是, 在今天的文化中, 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, 包括那些患有罕见疾病的人.
寻找我的灵感
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.
![](http://gv.hoonnation.com/wp-content/uploads/2022/04/Adaptive-Clothing-Key-Features_800x525.jpg)
多年来, the idea remained a dream as I navigated the demands of life as a busy young professional. 然后, in 2020, my life flashed before my eyes as I underwent open heart surgery, 对任何人来说都是非常危险的手术, but even more so for someone with a rare disease. 当我从手术中醒来时, 我听到了祖母的声音, who had recently passed and shared my love of fashion as a seamstress, 告诉我不能再等了. Life is short and there is no better time than now.
让我的梦想成真
I started by founding a non-profit organization called 稀有设计. Our mission is to celebrate the rare that makes us unique and extraordinary. We strive to assist individuals with rare diseases and disabilities, 还有他们的家人, 在创造包容意识方面, 代表和积极地生活. 稀有设计致力于外展, 教育, 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? 没错,5月7日, 2022, we will put Sioux Falls on the fashion map with a NYC-style fashion show – with my own special twist, 当然! “The Style Show: A Runway to Empower” will feature models of varied abilities, 年龄, 性别(LGBTQIA), 种族和不同的体型. All proceeds from the event will benefit the local non-profit 勇敢地呼吸, an organization dedicated to giving voice to people with the rare disease Cystic Fibrosis.
授权和庆祝真正的多样性
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. 稀有设计 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.
敬请期待更多内容!
Rare beauty is stitched within each of us and sewn within each cell. 无论澳门正规博彩十大排行平台如何昂首阔步地走在t台上, it’s the beauty and rarity composed within each of us that makes us each breathtakingly beautiful. I look forward to taking my 澳门正规博彩十大排行平台 family on this journey, so stay tuned for more! 在下一篇博客中, 我会把计划过程告诉你的, including everything from finding boutiques and models to a venue fit for more than 200 attendees. 欲了解更多信息,或购买门票,请点击这里 访问我的活动页面!