KEEPING IT REAL: Alexa’s 40-Mile Ride

Thu 01 Jun 2023

On Sunday, May 7, 2023, CPARF's team of Athletes for Accessibility participated in the 45th Annual TD Five Boro Bike Tour — riding 40 miles with 32,000 other people around New York City. The following is a brief Q&A with Alexa Orban, a young woman with cerebral palsy who finished the tour and raised funds to support cerebral palsy research and disability innovation. Follow Alexa on Instagram @lexi_orban

KEEPING IT REAL: Alexa's 40-Mile Ride*

What were you feeling when you crossed the finish line? 

When we crossed the finish line, it honestly felt surreal. We all had been training for the race for a few months, and the day was finally here! The entire day was such an adventure, and holding that medal in my hands made it all feel so real. I was proud of myself and I was so thankful for the donors that had supported our team for believing in us. Crossing the finish line with Katy and my mom and doing all 40 miles with them will forever be a snapshot memory in my mind!

What would you say to others with CP who want to challenge themselves to do something physical like this? 

If you would've asked me if I would be able to do something like this last year, I would've said NO way! With anyone, disability or not, it's interesting how easily we tell ourselves that our body isn't capable. My advice is to know your limits, but keep your mind open to the possibilities. You never know what your body can do until you set a goal. That goal can be broken into milestones, and as you hit each one, you realize you are building up to something great! 

Can you share how CP research or disability technology has shaped your life? 

For such a long time, I didn't understand my disability. After I left my pediatric orthopedic, I didn't go to the doctor for almost 8 years to receive any care for my CP. As I started my content sharing my life with CP, I found so many resources and amazing people who have helped me better understand my body. It honestly has felt so freeing to connect with the CP community in so many ways. I know that I am no longer alone, and there are so many ways that I can get the support I need! I just recently got fitted for a brace that will help me walk and stay on my feet longer. For 28 years I didn't know that disability tech could be a tool in my toolbox to staying active! What I have learned now is that you have to do your research, network with others, and stay on top of the current breakthroughs in order to advocate for yourself correctly as a person with a disability. 

*Alexa's story is part of KEEPING IT REAL — a series of personal stories that will take you deeper into the lives of people with CP. Each person makes different choices based on what works for them, and we’ll showcase that — highlighting what life is like for them on a daily basis, what they care about, and the ways CP impacts them. 

The KEEPING IT REAL blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice or medical endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.

Thu 11 Apr 2024

In the first part of our newest Science Spotlight blog, learn how scientists can harness electricity to help with movement disorders that sometimes accompany cerebral palsy.

Thu 04 Apr 2024

Check out the final part of Rindi and Soren’s story.