Hey there! I'm Kelly! 

I'm running the Disney Princess Half Marathon in honor of a remarkable patient I worked with years ago who had Rett Syndrome. He made a lasting impression on me—not just because of his strength and spirit, but because I saw firsthand how misunderstood this condition can be.

I remember having to advocate constantly—for services, for understanding, for access to care. Many people, even educators and professionals, didn’t know much about Rett Syndrome. That experience lit a fire in me to help raise awareness and make sure families impacted by Rett aren’t navigating this alone.

By running for Rett, I hope to shine a light on this rare disorder and support the research, resources, and community that families so desperately need.

Rett Syndrome is a debilitating neurological disorder that predominantly affects females (but can also affect boys). Rett Syndrome is the leading genetic cause of severe neurological impairment in girls and is characterized by a single gene mutation that leads to underproduction of an important brain protein known as MECP2.

Kids are born “normal,” but without the protein, begin to lose acquired skills between 1 and 3 years old. Most lose their ability to speak, walk or use their hands, and depend on their families for every part of their day. Complications also include seizures, scoliosis, and the potential for sudden death.

Despite their physical disabilities, girls and boys with Rett Syndrome function at a similar cognitive level to their peers. Amidst the mass confusion in their central nervous systems, they are smart, strong, and waiting bravely for us to unlock the door to a cure and their recovery. 

If you’re able to donate, share, or simply spread the word, thank you. Every step, every dollar, every voice makes a difference.

Thank you!!