Samantha Kilburn
Founder, Disability Advocate
Growing up with Ehlers Danlos Syndrome and a variety of other chronic illnesses meant that Samantha never felt challenged in the same ways as her peers. In high school she never felt smart, but when she got to college everything changed.
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Becoming a triple-major at Oregon State University-Cascades and Central Oregon Community College, Samantha grew to love school. Thus her academic and disability advocacy journey began.
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A Bit About Me
Growing up in and out of the children's hospital meant I faced a variety of challenges no child should ever face. With endless doctors' appointments, tests, and procedures, I was often looked at in a pitiful manner that echoed the message "you can't". You can't do well in school. You can't accomplish your dreams. You can't go to college. I believed those words for many years, but when I embarked on a journey of academic discovery in my senior year of high school, I flipped the script.
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I learned that I was, in fact, capable of the same dreams as my peers. I just need to adapt in ways other people did not have to. Producing a short film and massive amount of videos on TikTok, I grew to 20,000 followers on Instagram before getting hacked. With a newfound passion for disability advocacy, the words "I can" ringed loud in my head.
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Now developing a pediatric energy pacing app based on biometric data gathered from wearables, my life has erupted into a breeding ground for innovation, advocacy, and a life-long desire to make a difference.
Work Experience
June 2024 - Sep 2025
July 2025 - July 2025
Social Media Marketing Specialist Volunteer
Boulder, Colorado, United States · Remote
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Focusing on supporting adolescents with neurological conditions, I used my lifelong passion for advocacy and video editing skills to create social media content that aligned with FNDcourage's overall branding, alongside being a featured speaker at their online events.
June 2025 - July 2025
Redmond, Oregon, United States · On-site
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Stemming from a lifelong passion for disability advocacy, I assisted special needs children between the ages of 8 and 11 in learning how to ride adaptive bicycles. I helped regulate the children through deep breathing and play when they became escalated, supported their bodies in performing the necessary gross motor skills needed for this task, communicated with parents and caregivers, and invited a calm space for the children to grow.
Ronald McDonald House · Part-time
Bend, Oregon, United States · On-site
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Through a weekly volunteer position at the Ronald McDonald House, I utilized skills in cleaning and active listening to support families of critically ill children at the local hospital.