Please help me support Girl Power 2 Cure in their efforts to raise funds for research for Rett Syndrome. If you have made it to this page, most likely you have followed me through one of my record breaking handcycle races. Today though, I want to share a little bit about another athlete with a disability, Evie. I met Evie and her mom Candice several years ago through a runDisney race. They have become part of my close circle, even vacationing together. Evie is a bright, strong willed, and adventurous girl with a great sense of humor. Evie has Rett Syndrome. 

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. 

Today, there is no cure. But Rett Syndrome is potentially CURABLE! Mouse and primate experimental treatments have proven that once MECP2 protein levels are restored to normal levels, symptoms subside.

In 2025, I will be racing the Princess Half Marathon in honor of Evie and fully intend to set a course record for her. While her declining health may not allow her to race as a duo athlete as she normally does, we will carry her spirit and fight with us.