When Carolyn’s son Miles was diagnosed with Prader-Willi syndrome, she faced a new world of unknowns. But it didn’t take long for her to channel that uncertainty into action. Now, in her second year hosting a One Small Step walk, Carolyn is rallying her small town to fund research that will change not only her son’s future but the future of everyone living with PWS.
Meet Carolyn, One Small Step host, and proud mom to Miles
Miles was born at 28 weeks with no known complications other than some weird dips in his heart rate and low movement. As the weeks went on in the NICU and he wasn’t able to come off high needs breathing support, the question came about his low muscle tone. The neonatologists realized around week 5 it was time to do genetic testing, which came back around 8 weeks that there was a deletion. At 12 weeks, just hours after we busted him out of the NICU, we got the diagnosis of Prader-Willi syndrome. 
After settling from the first year of nonstop appointments, I knew I wanted to dip my toes into fundraising. The Foundation for Prader-Willi Research’s mission—to create a better future for our kids through bold research and a wide range of clinical trials—drew me in. After talking to Natalie at FPWR, I knew I was ready to fundraise! What drives me most in working with FPWR is raising money for what matters: making our kids’ futures better, brighter, and more independent.
The first year organizing felt a bit intimidating, but luckily I had an amazing support system (specifically my mom, shoutout to Patty)! We live in a small town and I was quickly AMAZED by how many of our small businesses came forward to sponsor, donate, and gift raffle items. My biggest piece of advice is to just reach out to everyone, because you never know who will surprise you! Our second year was smooth sailing and I remember telling everyone how relaxed I was the day of, and how much fun I got to have! Lean on your volunteers and support system and just enjoy the day.
This year, Miles got to start the walk. He decided just weeks before our event that it was his time to start walking, so this was truly so special for us. His drive, motivation and just excitement to explore is what encourages me to make this an annual tradition to fundraise every year. With the VYKAT approval this year, I feel unstoppable to help our kids succeed. I feel in my bones that this is just the beginning of some really exciting things moving forward, and I’m so lucky to be a part of it and rally my community to push us forward!
Feeling Inspired? Join Us!
Carolyn’s story is a powerful reminder that anyone can make a difference! Inspired to host your own One Small Step walk? We’re here to help every step of the way.
Learn more or reach out: natalie@fpwr.org
