Team Evie
Thank you for visiting my fundraiser page in support of Girl Power 2 Cure and their important work funding research for Rett Syndrome. If you’re here, you likely know me as a fun-loving runner and Disney enthusiast—or more likely through my accomplished (and crazy?) wife, Wendy. Today, I want to share a bit about another remarkable young athlete, Evie.

I met Evie and her mom, Candice, several years ago through my wife and the RunDisney/Roll Disney community. Evie is a vibrant, determined, and adventurous young girl with a great sense of humor, who also happens to live with Rett Syndrome.

Understanding Rett Syndrome
Rett Syndrome is a severe neurological disorder primarily affecting girls, though it can impact boys too. It’s caused by a single gene mutation, leading to underproduction of an essential brain protein called MECP2. Children with Rett are born healthy, but between ages 1 and 3, they begin to lose the skills they’ve gained, often losing the ability to speak, walk, or use their hands. Most require full-time support and face challenges like seizures, scoliosis, and the risk of sudden death.

Despite these physical limitations, children with Rett Syndrome have cognitive abilities similar to those of their peers. Their intelligence and resilience are present, waiting for the breakthrough that could help them live fuller lives.

Why We’re Fighting for a Cure
There is hope—Rett Syndrome is believed to be curable. Studies have shown that restoring MECP2 protein levels can alleviate symptoms, offering real promise.

In 2025, I’ll be running the Princess Half Marathon in honor of Evie, determined to bring as much fun and adventure on course for her. While her declining health may not allow her to join as a duo athlete as she normally does, we’ll carry her spirit with us every mile.