Show Notes:

Episode Summary:

In this episode of The Inclusive Dad podcast, host AAron sits down with Kendra Gottsleben, a rare disease and disability advocate, to explore what true inclusion looks like in practice. Kendra shares her journey with Mucopolysaccharidosis (MPS), her role as founder of Rare by Design, and how representation and accessibility can transform communities. From film festivals to inclusive fashion shows, she highlights innovative ways to elevate voices often left out of conversations. Together, AAron and Kendra discuss why creating spaces where people with disabilities and rare diseases are present at decision-making tables is essential for lasting change.

Key Takeaways:

Lived Experience Matters – Inclusion requires people with disabilities and rare diseases at decision-making tables.

Representation in Action – Events like film festivals and fashion shows can normalize authentic diversity.

Everyday Accessibility – Small changes at venues can create lasting impact for families.

Parent & Family Voice – Parents and siblings also play a vital role in advocacy.

Disability is Universal – With age or circumstance, most people will experience disability in their lifetime.

About the Guest(s):

Kendra Gottsleben:

Kendra Gottsleben, Founder & Executive Director of Rare by Design, Disability and Rare Disease Advocate, Marketing Specialist at USD Center for Disabilities

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!

Kendra's definition of inclusion:

Inclusion is having people with disabilities and rare diseases at the tables where decisions are being made so they can help guide and give their input on how to make it more accessible.

Connect with Kendra Gottsleben:

Personal Website: https://www.kendragottsleben.com/

Instagram: https://www.instagram.com/rarebydesign/

Facebook: https://www.facebook.com/RareByDesign#

Website: https://www.rarebydesign.org/

YouTube: https://www.youtube.com/@rarebydesign

SPAM© Count:

Host:

Yes

Current Guest: 

Yes

Cumulative Guest Stats:

Yes - 54

No - 78

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