Kendra Gottsleben
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kegottsleben.bsky.social
Kendra Gottsleben
@kegottsleben.bsky.social
53 followers 28 following 56 posts
#Disability and #RareDisease advocate. Executive director of @rarebydesign.bsky.social. Author and fashion enthusiast committed to true representation and inclusion.
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kegottsleben.bsky.social
Amplifying the voices of people with rare diseases & #disabilities isn’t charity—it’s change. Every voice shared helps shape more inclusive schools, workplaces & public spaces. When we listen, we learn. When we include, we grow.

How can you help amplify others this week?

#DisabilityInclusion
Text on image says 'Amplify Voices!'. The image has multi colors of pink, purple & blue speech bubbles surrounding a silver microphone.
October 14, 2025 at 3:54 PM
kegottsleben.bsky.social
Turning 41 in a few months feels like both a milestone & a miracle. Living with a rare disease has taught me resilience, patience & how to celebrate the small victories most people never notice.
August 30, 2025 at 11:38 PM
kegottsleben.bsky.social
Young Kendra ready to take on the Christmas cold weather in her new stylish coat made by Grandma Gottsleben! I was blessed with two Grandmas that made awesome clothes for me.

#OldPhoto #90s #RareDisease #Disability #Style #MakeLemonade
Kendra standing in a living room with a teal coat and black hat on. There is an old school TV and ceramic Christmas tree in the background.
April 30, 2025 at 12:07 AM
kegottsleben.bsky.social
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I was diagnosed w/ #Mucopolysaccharidosis Type VI at 4 yrs. The signs that led to my diagnosis were having a Kyphosis, countless ear infections, bent knees & curved fingers to name a few. I’m now 40 & work hard every day to move things forward for people w/ rare diseases in all aspects of life.
Female sitting in a wheelchair outside. There is a building behind her. On each side of her on the ground are smaller tree bushes. She is wearing a teal dress with a necklace on.
February 16, 2025 at 2:23 AM
kegottsleben.bsky.social
Do you remember being read to at a young age? I do & it was where I began to learn about the world around me. The one thing I didn't see was stories about #PWDs or #RareDiseases. As I grew up I became passionate about writing & knew I wanted to improve the... www.facebook.com/photo/?fbid=...
A man and a little girl sit on a bench by a window reading a book.
January 27, 2025 at 4:50 PM
kegottsleben.bsky.social
Today is the last #Naglazyme infusion of 2024. These weekly infusions have been occurring for over 20+ years. I’m so lucky that researchers took the time to work for a treatment for #Mucopolysaccharidosis Type VI. Feeling grateful.

#MPSVI #RareDisease #Disability #CareAboutRare
Infusion pump with cords and tubes coming out of the pumps. Photo is black and white. Female wearing an oxygen tube in her nose. It’s a selfie of the female. The photo is in black and white.
December 27, 2024 at 5:49 PM
kegottsleben.bsky.social
#MerryChristmas everyone! Hope you all were able to enjoy and spend it with those you love and cherish. It’s Macaroon’s first Christmas. Chip isn’t a fan of photos…lol.
1 female sitting and holding a puppy. She is in a kitchen. 1 male standing and holding a puppy. 1 female sitting next to the female standing. They are in a kitchen.
December 26, 2024 at 1:57 AM
kegottsleben.bsky.social
Several months ago, the Muenzer MPS Research & Treatment Center contacted me & asked if they could hang a photo of me on one of their clinic's walls. I said yes, they absolutely could. I mean, what an amazing honor.

I'm still in... www.facebook.com/photo.php?fb...
#RareDisease #Research #Advocacy
A clinic waiting room filled 8 chairs and 3 tables. On the wall are 5 hanging photos of kids and an adult with MPS.
November 21, 2024 at 3:17 PM
kegottsleben.bsky.social
I'm 14 days into being 40, and my feeling of hopefulness for our future is not where it was on my birthday! As a female who has a #RareDisease and #Disability, I worry about what lies ahead.

Thank you to those who are working on advocacy for #PWDs and rare diseases!
Kendra sitting in a wheelchair next to a shelf with flowers, little cake cups and a sign that says ‘Cheers to 40’. There is a cake next to her on a high table.
November 17, 2024 at 11:16 PM