Kendra Gottsleben
@kegottsleben.bsky.social
#Disability and #RareDisease advocate. Executive director of @rarebydesign.bsky.social. Author and fashion enthusiast committed to true representation and inclusion.
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
How can you help amplify others this week?
#DisabilityInclusion
October 14, 2025 at 3:54 PM
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
How can you help amplify others this week?
#DisabilityInclusion
Reposted by Kendra Gottsleben
Representation matters!
When people with rare diseases and disabilities are seen and heard, communities grow stronger. Visibility changes perceptions—and opens doors to empathy, understanding and inclusion.
#RepresentationMatters #VisibilityCreatesChange #InclusionIsAlwaysIn
When people with rare diseases and disabilities are seen and heard, communities grow stronger. Visibility changes perceptions—and opens doors to empathy, understanding and inclusion.
#RepresentationMatters #VisibilityCreatesChange #InclusionIsAlwaysIn
October 11, 2025 at 5:33 PM
Representation matters!
When people with rare diseases and disabilities are seen and heard, communities grow stronger. Visibility changes perceptions—and opens doors to empathy, understanding and inclusion.
#RepresentationMatters #VisibilityCreatesChange #InclusionIsAlwaysIn
When people with rare diseases and disabilities are seen and heard, communities grow stronger. Visibility changes perceptions—and opens doors to empathy, understanding and inclusion.
#RepresentationMatters #VisibilityCreatesChange #InclusionIsAlwaysIn
Sometimes the best therapy is a pen and paper—or in this case, a keyboard. Took some time to write and reflect today.
See blog here: www.kendragottsleben.com/post/living-...
#RareDisease #Disability
See blog here: www.kendragottsleben.com/post/living-...
#RareDisease #Disability
Living Rare, Smiling Always
Living with Mucopolysaccharidosis Type VI has shaped me in ways both visible and invisible. It has taught me lessons most people don’t face until much later in life—lessons unique to living with a rar...
www.kendragottsleben.com
September 28, 2025 at 10:50 PM
Sometimes the best therapy is a pen and paper—or in this case, a keyboard. Took some time to write and reflect today.
See blog here: www.kendragottsleben.com/post/living-...
#RareDisease #Disability
See blog here: www.kendragottsleben.com/post/living-...
#RareDisease #Disability
So fun to share!
Did you see our Founder & Executive Director on Keloland Living today? She joined hosts Ashley Thompson and Mitchell Olson. Together they discussed The Film Festival — happening this week.
#InclusionIsAlwaysIn #RBDTheFilmFestival #TheFilmFestival www.keloland.com/keloland-liv...
#InclusionIsAlwaysIn #RBDTheFilmFestival #TheFilmFestival www.keloland.com/keloland-liv...
www.keloland.com
September 17, 2025 at 12:50 AM
So fun to share!
Reposted by Kendra Gottsleben
Did you know our Founder and Executive Director walked in a New York Fashion Show back in 2016 with Runway of Dreams? That experience inspired her to bring a similar event to Sioux Falls, South Dakota.
She had never seen anyone with her rare disease walk a runway…
So she became the first.
She had never seen anyone with her rare disease walk a runway…
So she became the first.
September 15, 2025 at 6:44 PM
Did you know our Founder and Executive Director walked in a New York Fashion Show back in 2016 with Runway of Dreams? That experience inspired her to bring a similar event to Sioux Falls, South Dakota.
She had never seen anyone with her rare disease walk a runway…
So she became the first.
She had never seen anyone with her rare disease walk a runway…
So she became the first.
Take 30 Seconds to Make a Difference!
Please write in by Sept. 20 to speak out against proposed changes that will impact hundreds of children across our state who receive specialized services.
At end of article, there are 2 ways shared on how to share comments.
www.dakotanewsnow.com/2025/09/09/s...
Please write in by Sept. 20 to speak out against proposed changes that will impact hundreds of children across our state who receive specialized services.
At end of article, there are 2 ways shared on how to share comments.
www.dakotanewsnow.com/2025/09/09/s...
State proposed funding cuts to affect LifeScape services
A group of South Dakota families is raising the alarm to voice opinions on the care and treatment of children with disabilities and possible cuts to LifeScape, as proposed by the South Dakota Departme...
www.dakotanewsnow.com
September 10, 2025 at 2:37 PM
Take 30 Seconds to Make a Difference!
Please write in by Sept. 20 to speak out against proposed changes that will impact hundreds of children across our state who receive specialized services.
At end of article, there are 2 ways shared on how to share comments.
www.dakotanewsnow.com/2025/09/09/s...
Please write in by Sept. 20 to speak out against proposed changes that will impact hundreds of children across our state who receive specialized services.
At end of article, there are 2 ways shared on how to share comments.
www.dakotanewsnow.com/2025/09/09/s...
Reposted by Kendra Gottsleben
My conscience tells me to do what's necessary to save lives and get vaccinated.
RFK Jr. sends a letter notifying state awardees of the Vaccines for Children Program (VCP) that participating immunization programs and program-registered providers must respect state religious and conscience exemptions from vaccine mandates.
September 6, 2025 at 8:09 PM
My conscience tells me to do what's necessary to save lives and get vaccinated.
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
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.
Reposted by Kendra Gottsleben
Meet Sara Tebben, one of our incredible committee members! Chances are you have already met, as Sara is heavily involved in the community, creating connections & spreading joy everywhere she goes! We’re so grateful to have her on our team. ☺️
#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
August 14, 2025 at 2:23 PM
Meet Sara Tebben, one of our incredible committee members! Chances are you have already met, as Sara is heavily involved in the community, creating connections & spreading joy everywhere she goes! We’re so grateful to have her on our team. ☺️
#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
For kids with ultra-rare diseases like #MPS and #ML, the biggest barrier isn’t a lack of treatments, it’s an outdated FDA process built for large populations. However, many kids will never see these results due to lengthy FDA approval timelines and delays. www.biocentury.com/article/6566...
FDA delays mean more deaths: Ultrarare diseases need a fit-for-purpose pathway
Process is slowing down progress. Science has evolved, and promising treatments are no longer the barrier to children with severe diseases living healthier...
www.biocentury.com
August 13, 2025 at 5:28 PM
For kids with ultra-rare diseases like #MPS and #ML, the biggest barrier isn’t a lack of treatments, it’s an outdated FDA process built for large populations. However, many kids will never see these results due to lengthy FDA approval timelines and delays. www.biocentury.com/article/6566...
So excited! Grab your ticket today!
Presenting the official selections for 2025!
Congrats, filmmakers! Thanks for sharing your incredible stories & allowing us to showcase them on the big screen.
We’ll see you in September!
Grab tickets: 2025TheFilmFestival.eventbrite.com
#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
Congrats, filmmakers! Thanks for sharing your incredible stories & allowing us to showcase them on the big screen.
We’ll see you in September!
Grab tickets: 2025TheFilmFestival.eventbrite.com
#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
August 2, 2025 at 1:24 PM
So excited! Grab your ticket today!
Thank you to Sioux Falls Simplified
for sharing about the ADA Sioux Falls’ upcoming festival and events honor #DisabilityPrideMonth! www.sfsimplified.com/how-sioux-fa...
for sharing about the ADA Sioux Falls’ upcoming festival and events honor #DisabilityPrideMonth! www.sfsimplified.com/how-sioux-fa...
How Sioux Falls is celebrating 35 years of disability rights
This Saturday marks the 35th anniversary of when the Americans with Disabilities Act was signed into law, prohibiting discrimination on the basis of disability
www.sfsimplified.com
July 24, 2025 at 3:26 PM
Thank you to Sioux Falls Simplified
for sharing about the ADA Sioux Falls’ upcoming festival and events honor #DisabilityPrideMonth! www.sfsimplified.com/how-sioux-fa...
for sharing about the ADA Sioux Falls’ upcoming festival and events honor #DisabilityPrideMonth! www.sfsimplified.com/how-sioux-fa...
Thank you to KELOland Living
for having Tana Zwart & Vicki Stewart on this week to talk about the impact of the ADA and all of the ADA celebration activities happening this month! Check out the feature here. Your feature helps move the needle forward! www.keloland.com/video/ada-35...
for having Tana Zwart & Vicki Stewart on this week to talk about the impact of the ADA and all of the ADA celebration activities happening this month! Check out the feature here. Your feature helps move the needle forward! www.keloland.com/video/ada-35...
www.keloland.com
July 20, 2025 at 4:03 PM
Thank you to KELOland Living
for having Tana Zwart & Vicki Stewart on this week to talk about the impact of the ADA and all of the ADA celebration activities happening this month! Check out the feature here. Your feature helps move the needle forward! www.keloland.com/video/ada-35...
for having Tana Zwart & Vicki Stewart on this week to talk about the impact of the ADA and all of the ADA celebration activities happening this month! Check out the feature here. Your feature helps move the needle forward! www.keloland.com/video/ada-35...
“As a young person and wheelchair user in the 1970s, I was carried into restaurants, could not ride the public bus with friends, and was forced to crawl on the floor to use public restrooms because there wasn’t any meaningful accessibility.”
www.chicagobusiness.com/elevate/disa...
www.chicagobusiness.com/elevate/disa...
Commentary: Americans With Disabilities Act brought benefits to everyone
More than three decades after becoming law, the rights it enshrined must be protected, writes the CEO of Access Living.
www.chicagobusiness.com
July 19, 2025 at 3:39 AM
“As a young person and wheelchair user in the 1970s, I was carried into restaurants, could not ride the public bus with friends, and was forced to crawl on the floor to use public restrooms because there wasn’t any meaningful accessibility.”
www.chicagobusiness.com/elevate/disa...
www.chicagobusiness.com/elevate/disa...
Grab your tickets today!
We’re 2 months out from #TheFilmFestival, but tickets are on sale TODAY! Tap the link to get yours: 2025thefilmfestival.eventbrite.com
Join us on Sept. 18th for a rare opportunity to see even rarer voices on the big screen at the Sioux Falls State Theatre.
#RBDTheFilmFestival #InclusionIsAlwaysIn
Join us on Sept. 18th for a rare opportunity to see even rarer voices on the big screen at the Sioux Falls State Theatre.
#RBDTheFilmFestival #InclusionIsAlwaysIn
July 18, 2025 at 4:55 PM
Grab your tickets today!
"In 1943, a study of 100 companies compared the productivity of disabled and non-disabled workers. The results were groundbreaking: Disabled employees performed as well as, or better than, their non-disabled peers across all evaluated categories." www.pbs.org/wgbh/america...
How People with Disabilities Helped Win World War II | American Experience | PBS
Rosie the Riveter called women to join the workforce during World War II. But there was another recruitment campaign aimed at mobilizing millions of Americans previously deemed “ineligible” for milita...
www.pbs.org
July 15, 2025 at 1:36 AM
"In 1943, a study of 100 companies compared the productivity of disabled and non-disabled workers. The results were groundbreaking: Disabled employees performed as well as, or better than, their non-disabled peers across all evaluated categories." www.pbs.org/wgbh/america...
Reposted by Kendra Gottsleben
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For the past 2 yrs, we’ve celebrated Disability Empowerment Month with impactful outdoor billboard campaigns across Sioux Falls, SD, highlighting the power of disability visibility. This year, we’re proud to continue the tradition—with a fresh addition. Alongside our outdoor billboards, we’ve
For the past 2 yrs, we’ve celebrated Disability Empowerment Month with impactful outdoor billboard campaigns across Sioux Falls, SD, highlighting the power of disability visibility. This year, we’re proud to continue the tradition—with a fresh addition. Alongside our outdoor billboards, we’ve
July 14, 2025 at 9:17 PM
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For the past 2 yrs, we’ve celebrated Disability Empowerment Month with impactful outdoor billboard campaigns across Sioux Falls, SD, highlighting the power of disability visibility. This year, we’re proud to continue the tradition—with a fresh addition. Alongside our outdoor billboards, we’ve
For the past 2 yrs, we’ve celebrated Disability Empowerment Month with impactful outdoor billboard campaigns across Sioux Falls, SD, highlighting the power of disability visibility. This year, we’re proud to continue the tradition—with a fresh addition. Alongside our outdoor billboards, we’ve
Reposted by Kendra Gottsleben
As Disability Pride Month is underway while basic human rights continue to be dismantled, joy isn’t frivolous. It's essential.
emilyladau.substack.com/p/disability...
emilyladau.substack.com/p/disability...
Disability Pride and Joy in the Shadow of the Big Ugly Bill
On what Congress defines as "beautiful" vs. what actually is.
emilyladau.substack.com
July 5, 2025 at 7:31 PM
As Disability Pride Month is underway while basic human rights continue to be dismantled, joy isn’t frivolous. It's essential.
emilyladau.substack.com/p/disability...
emilyladau.substack.com/p/disability...
Act Now to Protect Medicaid - Take it to The House! nacdd.quorum.us/campaign/132...
Action Alert: Oppose Medicaid Cuts in the Senate Reconciliation Bill!
Take Action Now: Contact Your Senators to Protect Medicaid!
nacdd.quorum.us
July 2, 2025 at 4:11 PM
Act Now to Protect Medicaid - Take it to The House! nacdd.quorum.us/campaign/132...
ACTION ALERT & NEWS RELEASE mailchi.mp/84227797c0e0...
The Big Ugly Bill: Action Alert & News Release
mailchi.mp
July 2, 2025 at 2:24 AM
ACTION ALERT & NEWS RELEASE mailchi.mp/84227797c0e0...
Reposted by Kendra Gottsleben
As you scroll this month, I hope you come across images of the Disability Pride flag.
In 2022, The Accessible Stall (the podcast I co-host) got the scoop from its inventor, Ann Magill.
Learn more about the flag and the evolution of its design.
🩶❤️💛🤍🩵💚
www.theaccessiblestall.com/episode-106-...
In 2022, The Accessible Stall (the podcast I co-host) got the scoop from its inventor, Ann Magill.
Learn more about the flag and the evolution of its design.
🩶❤️💛🤍🩵💚
www.theaccessiblestall.com/episode-106-...
Episode 106: The Accessible Stall Interviews Ann Magill, Disability Pride Flag Creator - The Accessible Stall
We’re so thrilled about this episode! In celebration of Disability Pride Month, we had the honor of getting to interview Ann Magill, the creator of the Disability Pride flag. Tune to learn more about ...
www.theaccessiblestall.com
July 2, 2025 at 2:06 AM
As you scroll this month, I hope you come across images of the Disability Pride flag.
In 2022, The Accessible Stall (the podcast I co-host) got the scoop from its inventor, Ann Magill.
Learn more about the flag and the evolution of its design.
🩶❤️💛🤍🩵💚
www.theaccessiblestall.com/episode-106-...
In 2022, The Accessible Stall (the podcast I co-host) got the scoop from its inventor, Ann Magill.
Learn more about the flag and the evolution of its design.
🩶❤️💛🤍🩵💚
www.theaccessiblestall.com/episode-106-...
URGENT: #Medicaid Cuts in the House-Passed Reconciliation Bill Put People with Disabilities at Risk!
The bill moves to the Senate, and we need your help to ensure that it doesn't become law!
nacdd.quorum.us/campaign/127...
The bill moves to the Senate, and we need your help to ensure that it doesn't become law!
nacdd.quorum.us/campaign/127...
Action Alert: Oppose Medicaid Cuts in the Senate Reconciliation Bill!
Take Action Now: Contact Your Senators to Protect Medicaid!
nacdd.quorum.us
June 20, 2025 at 11:02 PM
URGENT: #Medicaid Cuts in the House-Passed Reconciliation Bill Put People with Disabilities at Risk!
The bill moves to the Senate, and we need your help to ensure that it doesn't become law!
nacdd.quorum.us/campaign/127...
The bill moves to the Senate, and we need your help to ensure that it doesn't become law!
nacdd.quorum.us/campaign/127...
The South Dakota Council on Developmental Disabilities (SDCDD) is in the process of creating their State Plan for 2027-2031, which will outline the direction of the Council's work for the next five years. Please consider sharing your input. www.surveymonkey.com/r/SDCDDSurve...
2027-2031 State Plan Input Survey
The SD Council on Developmental Disabilities needs your input!
www.surveymonkey.com
June 17, 2025 at 12:48 AM
The South Dakota Council on Developmental Disabilities (SDCDD) is in the process of creating their State Plan for 2027-2031, which will outline the direction of the Council's work for the next five years. Please consider sharing your input. www.surveymonkey.com/r/SDCDDSurve...
Reposted by Kendra Gottsleben
Only 2 weeks left to send us your films!
Committee member Max Hofer is here to answer questions on how to submit.
Still have questions? Comment below & we’ll answer. Follow us for more!
See submission link: filmfreeway.com/TheFilmFesti...
#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
Committee member Max Hofer is here to answer questions on how to submit.
Still have questions? Comment below & we’ll answer. Follow us for more!
See submission link: filmfreeway.com/TheFilmFesti...
#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
June 15, 2025 at 4:00 PM
Only 2 weeks left to send us your films!
Committee member Max Hofer is here to answer questions on how to submit.
Still have questions? Comment below & we’ll answer. Follow us for more!
See submission link: filmfreeway.com/TheFilmFesti...
#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
Committee member Max Hofer is here to answer questions on how to submit.
Still have questions? Comment below & we’ll answer. Follow us for more!
See submission link: filmfreeway.com/TheFilmFesti...
#TheFilmFestival #RBDTheFilmFestival #InclusionIsAlwaysIn
Reposted by Kendra Gottsleben
One way we’re honoring the #AmericansWithDisabilitiesAct, which was signed into law in July of 1990, is by having a sale in our Bonfire Store! Shop until July 2 for your 15% discount. At checkout, use code ADA15.
The mug in the photo is from our store! Shop here: www.bonfire.com/store/rare-b...
The mug in the photo is from our store! Shop here: www.bonfire.com/store/rare-b...
June 14, 2025 at 1:31 AM
One way we’re honoring the #AmericansWithDisabilitiesAct, which was signed into law in July of 1990, is by having a sale in our Bonfire Store! Shop until July 2 for your 15% discount. At checkout, use code ADA15.
The mug in the photo is from our store! Shop here: www.bonfire.com/store/rare-b...
The mug in the photo is from our store! Shop here: www.bonfire.com/store/rare-b...