Navigating the everyday, just a little differently.

My name is Katy (Fetters) Gaastra, Founder of Cerebral Palsy Strong and I’ll briefly share our history.

I grew up wanting a friend with CP but it took me until I was about 23 to meet those few friends in person. I've asked myself why that is and longed to change that reality for others.

On TeenCP, I narrated my everyday experiences with cerebral palsy in hope that I would reach someone like me. I would soon discover a whole world of people, young women and men, in search of the same thing. Parents of young children who were newly diagnosed reached out — desperate for information. I grew eager to provide reassurance and even understand cerebral palsy from other people’s perspectives.

I looked for a way to amplify others’ stories and began to post guest blogs. In this pre-social media era, TeenCP was a singular place for connection.

Topics like shoes, relationships, physical activity, and high school gave way to a deeper understanding of what it's like to enter into adulthood with a disability. By sharing those daily reflections and connecting with others like me, I realized how common these experiences were; how we often felt a bit lonely and largely misunderstood by our peers and even the medical community.

These bonds that we had formed online have lasted but by 2016, I still longed for a way to bring us all together to celebrate these friendships and shared experiences.

By early 2017, most of us who ‘met’ as teens were well into our twenties. Some of us went to college or entered the workforce, started dating, traveling — still discovering what to do with our lives, right? Life was happening and we needed to acknowledge this transition into adulthood — to move away from TeenCP; thus, Cerebral Palsy Strong came to be.

We forged better, more expansive connections with the help of Facebook and Instagram under this new identity where I first documented my experiences with a new mobility device called the ExoSym and continued sharing stories from within our growing community.

#CPstrong became our signature hashtag and it established a clear sense of belonging to a community that took me by surprise. It resonated deeply from day one. Yet a collective desire to meet IRL was still strong so I made in my mission to organize an event for us to come together.

Still figuring out this whole ‘adulting’ thing, we I wanted to provide us all with the opportunity to meet one another; to feel understood, seen, and heard by those around us…

By this time, I still wasn’t seeing any existing organization in our community creating these spaces. Space where we could just be. Space to celebrate being disabled in a world that often rejects difference. I had even proposed an event without any enthusiasm or interest from the potential collaborator.

So we made it happen for ourselves. With a lot of support from my graduate program at CU Boulder, my family and friends, and the broader online community, Cerebral Palsy Strong hosted our first event with over 40 people in attendance — mostly adults with cerebral palsy and our allies came to enjoy each other’s company, some food and drinks. This was more or less, a pilot event — physical accessibility wasn’t perfect and the space was loud and echoey, but we still had fun and made new friends!

It was important to me that we reduced financial barriers to participation as much as possible, so the event was free thanks to the generosity of a few willing donors and proceeds from t-shirt sales.

Some of us shared their stories live ‘on stage’ and we held moderated discussions about topics like managing CP in adulthood, finding jobs, accessible travel, mobility devices, and more. It was a beautiful, powerful experience and I knew at the end of the night, it wouldn’t be the last CP Social!

The pandemic was something that slowed us all down. Loss of life, jobs, social isolation, and emotional heaviness cast a spell over us for years. Maybe you’re still reeling from it, grieving what used to be or missing someone who’s no longer here. But the forward movement of time persists and here we are, four years later.

I hope you’re doing okay. I know I struggled. I struggled to feel motivated to continue this work and questioned whether it was safe to bring people together again.

Nonetheless, by mid-2022, armed with the support of a micro-grant from Arc’teryx and an eagerness to gather, we came together in the summer for the second CP Social it was just as meaningful as the first time.

In the background, I spent time dreaming about ways to make this work — really work. I wanted everyone to feel the sense of belonging I felt among new friends. But for the last several years, I spent my day working at a CP research organization and didn’t have the capacity to further CPstrong’s potential.

By the end of 2023, I knew it was time to realize this dream. I began making plans to quit my job and take this leap of faith…

And so begins a new era for Cerebral Palsy Strong.

As of March 2024, I’m committing myself fully to building community and taking steps to establish Cerebral Palsy Strong as an official nonprofit organization that will exist to serve the CP community unlike any other organization.

In this next phase, we'll work to expand our reach, amplify our collective voice, and build community for disabled people in need of belonging and connection. I'll need all the help i can get, but together, I really believe we can create a stronger presence in people's lives through organizing in-person events, continuing to share our stories, and so much more.

This will be a year of discovery and self-actualization for CPstrong — and over the next few years, we'll work together to realize the potential this organization has and the impact we want to have on this world. 

I've been dreaming about what's possible and I'm grateful to be able to pursue my dreams and dedicate my life to this work. I couldn’t do so without the support of my husband, my family, and every person who has helped me believe Cerebral Palsy Strong should exist.

This is a community of care, of connection, of belonging and I hope you'll join us for what's to come.