March 13, 2018 at 11:00 am #11323Kevin SchaeferKeymaster
From childhood friends to budding business partners, Abby Quinn and Kristen Bathe recently shared their story with the company WheelchairRapunzel & Co. Having attended last year’s Cure SMA conference in Orlando, Florida, the two are eager to become more involved in the SMA community.
Abby has SMA type 3, and Kristen has been able to learn more about this disease through their friendship. SMA News Today caught up with both Abby and Kristen for an interview.
Kevin Schaefer: So to start off, could you each talk about how you met and your involvement in the SMA community?
Kristen Bathe: Abby and I grew up as family friends, from the same area in rural North Carolina. When I moved to Chapel Hill in 2015, we became coworkers and neighbors — bringing us even closer. I started to learn more about SMA through curiosity-driven research and talking with Abby about her disease and how it affects her life. Through this research we came across the annual Cure SMA conference — and made it our mission to attend in July 2017!
Through persistence and amazing friends and family, we were able to completely fundraise our first conference trip! This got us excited and energized about getting more involved in the community, not only attending SMA events, but also starting a business that focused on helping those with SMA and other disabilities. After a particularly frustrating shopping trip with Abby, we created a fashion-forward clothing line for individuals with seated body types.
Abby Quinn: We realized how much we have in common and how much fun we have when I was a sophomore in college. We bonded at work, over brunch, our love of HGTV, and bargain shopping. I would casually talk about SMA and my life and Kristen never flinched when I asked for help, or when we had the serious talk of what SMA is and how it affects myself and others. I had never been to a Cure SMA conference, chapter meeting, or had even met that many people with SMA. It was a random Google search that led Kristen to the Cure SMA website and to the conference at Disney last year. Immediately Kristen said we had to go!
I was hesitant to travel without my parents or caregivers, but I was about to graduate college, so why not? I took a plane from North Carolina to Florida with two of my best friends to the Cure SMA conference. Since then I’ve met some amazing people, made so many connections in the SMA community, and even went to a Walk-n-Roll in Raleigh, NC. Now, Kristen and I are working on creating an adaptive clothing line focusing on people who use electric wheelchairs.
KS: The two of you recently took part in the Project Wear Your Genes for the organization WheelchairRapunzel & Co. Could you share what this initiative is about, and what this organization focuses on?
KB: Project Wear Your Genes is an initiative started by Alex Dacy from WheelchairRapunzel. Alex encourages everyone to love their genes no matter what “flaws” they may see. Alex is a trendy 20-something who also has SMA. She started WheelchairRapunzel as a way to share her love of fashion and a passion for advocating for those with disabilities, through Instagram, Project Wear Your Genes, and her online shop. This project seeks to bring awareness to rare diseases, one story at a time. Abby and I recently participated in this initiative by sharing our story of friendship and how SMA brought us closer.
KS: Abby, you lived away from home while you were in college, and you continue to pursue an independent lifestyle. What advice do you have for other SMA individuals about living independently and going to college?
AQ: I think my top tip for living independently and going to college is to remember that you are your biggest advocate. At the end of the day, you’re going to be the person who knows what care you need. At first, it was hard being 18 in college and being someone’s boss. I always took time to train whoever was helping me and to talk out any situation I would need help in. If something wasn’t working, it was up to me to say something and change it. My parents were two and a half hours away, and I was responsible for making caregivers’ schedules, communicating with the agency, and making sure my caregivers knew what I needed.
I think being vocal is something else that really helped me through college and living independently. If there was an issue with my apartment not being accessible or if I had any issues — I went to the office and addressed them. In college when I was sick or things popped up from my SMA, I communicated with my professors and classmates. The first time I was completely alone in the dining hall and I couldn’t reach a container of food I really wanted was hard. But I sucked it up, looked around and asked a random stranger if they would mind handing me the container, and without any hesitation they said of course! There was no awkwardness in the interaction and I got to eat my favorite chicken salad.
KS: It’s an exciting time in the SMA community with Spinraza now available and other treatments in clinical trials. Yet while these medical advancements are important, another component of making our lives easier is advocating for the rights of individuals with disabilities. What’s something that you wish more people understood about people with SMA and other disabilities?
AQ: I wish others would stop putting limits on people with disabilities. We’re one of the largest minorities, but we seem to be the least represented in society. I want kids who have disabilities to watch TV and see someone just like them. I want someone like me to go to the store and pick up a pair of pants and not worry if they’re going to fit, look flattering, or feel weird sitting all day. I am now lucky to say there was a treatment created in my lifetime, but there is so much more to tackle. I am no longer happy with just sitting content in my life…I want more, not just for me, but for the kids who were just like me.
KB: People with disabilities are missing key representation in many industries, including Hollywood and fashion — and we’re changing that. A disability, or any one quality does not define a person, nor should it. We as humans are all unique with many skills and interests and hobbies, and most would love to tell you about these things and give you perspective about their life. It is my hope that by raising awareness of SMA and other disabilities through initiatives such as Project Wear Your Genes, we will bring society closer to a world that’s inclusive of all people.
Follow us along our journey to creating an adaptive clothing line on Instagram @AbbyandKB! If you are interested in learning more about this project or how you can get involved, contact us today via email [email protected].
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