Board of Directors
Kendra Gottsleben
Founder & Executive Director
Rare by Design
Kendra is the marketing communication specialist at the Center for Disabilities at the University of South Dakota Sanford School of Medicine in Sioux Falls, South Dakota. She is an author and spokesperson on living a life with a rare disease and disability. Kendra is the founder and executive director of the nonprofit organization, Rare by Design. She is an Augustana University graduate with a double major in Sociology and Psychology. Her career blends the two worlds in which she grew up: medicine and education. Kendra’s memberships on numerous boards, advisory groups and professional societies keeps her actively engaged locally, state-wide and nationally.
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She has defined her life by a positive outlook and success in overcoming obstacles. Kendra refuses to be defined by Mucopolysaccharidosis (MPS)—the rare genetic condition she has had since birth. Kendra enjoys a stylish outfit and shoes to match as she strives to make a difference. One of her favorite colors is yellow which embodies her life motto: When life hands you lemons, make the BEST lemonade possible!
Colette Manning
Vice President, Marketing
Sanford Health
Colette is the vice president of marketing at Sanford Health and a proud alum of the University of Nebraska. Starting her career at Dakota, Minnesota & Eastern Railroad/Canadian Pacific Railway in 2008, Colette honed her skills in process improvement, data analytics and strategic problem-solving. Since joining the Sanford Health family in 2012, Colette has served in many roles and currently leads brand marketing and operations, including creative and content strategy, digital marketing,
media buying and production management. She takes great pride in her teams’ impact
on the experience of Sanford Health employees and patients.
Colette lives in Sioux Falls, South Dakota, with her husband, Justin, and their three boys,
ages twelve, ten and eight, and their two vizslas. She describes her household as controlled chaos and aims to ensure there
is laughter in every day.
Kristin Miller
Middle School Teacher
Sioux Falls School District
Kristin is a middle school science teacher in Sioux Falls, South Dakota. She is a proud graduate of both Dakota State University
and the University of Sioux Falls, where she earned her bachelor's degree in education and master's in educational leadership, respectively.
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Kristin became an outspoken advocate for awareness and inclusivity after the birth and later diagnosis of her daughter, Nellie. Nellie's rare diagnosis does not define her, but it has opened doors for the opportunity and importance of showcasing her amazing personality.
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In addition to being a Rare by Design board member, Kristin serves on the Harrisburg Disability Awareness Commission, is a member of the Early Childhood Comprehensive Systems Collaborative Family Leadership Group, and, along with her family, mentors an Augustana University genetics student.
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Kristin and her family can often be found camping, hiking, playing outdoors, and gardening.
Alicia Schumacher
Founder
Alicia Schumacher Co.
Alicia is the founder of Alicia Schumacher Co, a coaching business focused on empowering professional female leaders, both with and without ADHD, and helping organizations enhance their marketing strategies for greater impact. With 18 years of marketing experience and over a decade of leadership expertise, She combines her professional knowledge and personal experience with ADHD to transform challenges into strengths, both in business and leadership.
A passionate advocate for ADHD awareness and neurodiversity, Alicia is dedicated to fostering a more compassionate and inclusive future. She holds a degree in Broadcast Journalism from South Dakota State University (SDSU) and has completed the Leadership Sioux Falls program.
In addition to her coaching work, Alicia serves as a mentor for the Augustana MBA Program, is a member of the Spirit of Joy marketing committee, and sits on the Advisory Board for the SDSU Leadership and Management of Nonprofit Organizations program.
Outside of her professional endeavors, Alicia enjoys staying active with her family. She has adopted a "hybrid lifestyle" where she is building work around life, rather than life around work. She lives in Sioux Falls with her husband Andy and their two spirited young boys.
Kayley Shade
Director of Media
Indoor Football League
Kayley is the director of media for the Indoor Football League. She is also a freelance graphic designer. Kayley has an abundance of knowledge in media with over a decade
of graphic design, social media and press experience. In May 2016, she graduated with her degree in marketing with a design emphasis from Southeast Technical Institute (now, Southeast Technical College).
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Kayley has been raising awareness about Spinal Muscular Atrophy (SMA) and disability inclusion for over ten years. She was honored with South Dakota’s 2022 Governor’s Award for Outstanding Individual with a Disability. Kayley has been featured in several magazines and TV stories throughout her life.
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She calls Sioux Falls, South Dakota, home and enjoys spending her free time with family. Kayley is an avid football fan. Her most favorite teams are the Texas Longhorns and Dallas Cowboys. She is their #1 superfan!
Cassandra Swenson
Art Director
Gameday Social Apparel Co.
Cassandra is a Sioux Falls, South Dakota, based creative whose passion for accessibility stems from her deeper vision of
a more humane world. She has long been a fan of Rare by Design, and first learned of the nonprofit while working as Art Director at The Charlotte Letter, a small children’s clothing manufacturer focused on medically
adaptive clothing for kids with disabilities.
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Cassandra graduated from the University of Sioux Falls with a Bachelor of Fine Arts degree in Graphic Design and Painting. Today, she is the Art Director at Gameday Social Apparel Co., where she leads the design department in creating licensed apparel for the fans of collegiate and professional sports. Outside
of design, she is an avid baker who loves teaching cooking classes and hosting
dinner parties to bring people together.
Sara Tebben
Account Manager
HUB International
Sara Tebben is an Account Manager at HUB International who enjoys building meaningful relationships and helping clients find the right solutions. She is proud to serve on the Board of Directors for Rare by Design, where she supports a mission that is close to her heart. Sara is passionate about giving back to her community, advocating for inclusion, and helping create opportunities that make a positive impact on the lives of others.
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In 2000, Sara graduated from O’Gorman
High School and continued her education
at the University of South Dakota. In September of 2008, she married Joseph Tebben. Together, they have shared
countless cherished moments, weathered life’s challenges, and celebrated each other’s successes. In 2012, they welcomed their son Collin. He was born with Russell Silver Syndrome, a condition that has shaped
their family’s journey in profound ways. Through Collin’s resilience, courage,
and unwavering spirit, they have learned invaluable lessons about love, compassion, and the beauty of embracing life’s challenges with grace and determination.
Tana Zwart
Graphic Designer
Freelance Media Manager
Tana is a self-employed Media Manager with a passion for nonprofits, the arts and the community. She is Chair of the Disability Awareness and Accessibility Review Board for the City of Sioux Falls, South Dakota, active on various committees, as well as former National Ambassador for the Muscular Dystrophy Association. Tana has a significant volunteer and fundraising history, both in the rare disease community and in the arts. As a woman with a disability, and as an advocate, she strives to see more authentic representation and inclusion for those with disabilities in our local community. Tana is a music lover, cat lady and self-proclaimed fashion geek.