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Kendra facing the camera leaning on the back of her wheelchair smiling

About Kendra

Kendra Gottsleben’s life has been defined by a positive outlook and success in overcoming obstacles. This also means Kendra refuses to be defined by a rare disorder called Mucopolysaccharidosis, Type VI (MPS VI). She is a South Dakota native and is a 2010 Augustana University graduate with a bachelor’s degree in sociology and psychology. Kendra is the Marketing Communications Specialist at the Center for Disabilities within the Sanford School of Medicine at the University of South Dakota. She is also the Founder and Executive Director of Rare by Design. Her career blends the two worlds in which she grew up: medicine and education. Her ambition is to be a helpful resource to provide support for families and children who have severe or life-threatening illnesses or disabilities. One life accomplishment she’s most proud of is being a participant in phase II of a MPS VI clinical research enzyme trial in Oakland, California in 2002.

Kendra has served the disability services sector in multiple ways. For instance, she has mentored young adults with disabilities at the annual Youth Leadership Forum (YLF) in South Dakota. In addition, she has served on the South Dakota Governors Board of Vocational Rehabilitation, Dow Rummel Village Board of Trustees, the Sioux Falls Disability Awareness Commission, ADA (Americans with Disabilities Act) 25th Anniversary Celebration committee, chair of ArtAbility Exhibit in Sioux Falls and co-chaired Ms. Wheelchair South Dakota.

Kendra has been nominated for the YWCA (now known as EmBe) Tribute to Women Award—Tomorrow’s Leader and was featured as an inspirational speaker at TEDxSiouxFalls. She was also featured as one of The Young Leaders of the Year by 605 Magazine in 2013.


Kendra self-published her first book, Live Laugh Lemonade: A Journey of Choosing to Beat the Odds in 2012, in which she shares events in her life contending with MPS VI. Kendra discusses living, laughing and taking the lemons that life has served up and making them into lemonade. She also self-published her second book in 2014, a children’s story titled Kendra’s Lemonade. The character shows how people can persevere to make the best of tough situations, even in the face of real and lifelong challenges without comparing yourself with others; just do your best and have fun! She most recently worked with Includas Publishing on a third book, titled Kendra’s Perfect Dance Routine where the main character learns how we all can be perfect in our own unique way.

Please visit the bookstore, if you are interested in learning more about or purchasing the books.

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