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Board of Directors

Needle & Thread
Kendra Gottsleben standing in front a house wearing a pink, green and white strip shirt. Wearing glasses and has shoulder length hair.

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.

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, above the shoulder light brown hair. Behind her is a gray backdrop.

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 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, she has brown shoulder length hair. There is a tree trunk behind her.

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.

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 has opened doors for the opportunity and importance of showcasing her amazing personality.

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.

Kristin and her family can often be found  camping, hiking, playing outdoors, and gardening.

Alicia Schumacher, long blond hair pink top with black poka dots. Backdrop is black.

Alicia Schumacher
Digital Marketing

Alicia is a mom to two spirited young boys and married to Andy. She leads the Digital Marketing team at Midco and has worked in marketing for 18 years. Alicia holds a degree in broadcast journalism from South Dakota State University (SDSU).


She strives to lead the way towards a more compassionate and connected future. Alicia is passionate about raising more awareness about ADHD and neurodiversity.


She is a current participant of Leadership Sioux Falls, serves as a mentor for the Augustana MBA Program, is a marketing committee member for Spirit of Joy and is an Advisory Board Member for the SDSU Leadership and Management of Nonprofit Organization Board.


Alicia enjoys being active with her family, finding joy in the little things and can usually be found with a coffee in hand.

Kayley Shade, wearing a whitle jacket with a tan shirt and black pants. She is sitting in a wheelchair. Her hair is pulled into a ponytail.

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 nine years 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).

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’s has been featured in several magazines and TV stories throughout her life.

She calls Sioux Falls, South Dakota, home and enjoys spending her free 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, long blond hair past her shoulders. She is wearing a cream sweater and her background of photo is gold-orange baackdrop.

Cassandra Swenson
Art Director
The Charlotte Letter

Cassandra is a Sioux Falls, South Dakota, based graphic designer whose passion for accessibility stems from her deeper vision

of a more humane world. She entered the marketing industry to help bring powerful stories to life through visual design. 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.

Cassandra graduated from the University of Sioux Falls with a bachelor of fine arts degree in graphic design and painting and is currently a senior graphic designer at Click Rain. She is an avid-baker and loves teaching cooking classes, along with hosting dinner parties to bring people together.

Sara Tebben, long hair. Backgroud are circles of white. The photo is black and white.

Sara Tebben
HR Manager and Wellness Coordinator
Midwestern Mechanical

Sara is the HR Manager and Wellness Coordinator at Midwestern Mechanical. She has the privilege of contributing to the well-being and professional development of Midwestern Mechanical team members. In this role, Sara is committed to fostering a supportive and inclusive work environment that empowers individuals to thrive both personally and professionally. Through strategic HR initiatives and comprehensive wellness programs. She strives to promote a culture of health, happiness, and fulfillment within the organization.

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 Joesph 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, long brown hair past her shoulders. She has large loop earing, a necklace, black jacket and white shirt on. Background is 2 tan walks with photo frames with photos in them.

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.

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