Founder’s Story

I’ll never forget the butterflies in my stomach the first day my daughter Sarah and I showed up for kindergarten at our “regular” school. Girls like Sarah didn’t usually come to this school. There was another “place” for them.

That’s because Sarah is one of the thousands of girls suffering from a debilitating neurological disorder called Rett Syndrome. Condemned to an entire lifetime of struggles, these girls have been robbed of their ability to speak, walk, crawl, or use their hands. They depend on others for every part of their day. Despite all of these setbacks, Sarah is “in there” – trapped inside a body that just won’t work for her.

I asked the administrators at the school if Sarah could be integrated into a regular classroom with the rest of her peers. They hesitantly agreed.

I was hesitant too. Sarah moves constantly, puts her hands in her mouth, swats, pulls hair and screams. What would the other kids and their parents think? How would they treat her? Would they be mad their kid got stuck in Sarah’s class? Would the teacher be able to handle it? Would Sarah be able to handle it?

The questions just kept coming.

But on that first day, I just smiled. ALL the kids were moving constantly, putting their hands in their mouths, hitting, and letting out a few screams themselves. This was kindergarten after all. Even more inspiring, the kids were drawn to Sarah in such a positive way. They wanted to talk to her. They wanted to sit next to her. They wanted to help her.

In particular, I noticed that it was the girls in the classroom who were especially nurturing; wanting to read stories, push her wheelchair, wipe her nose, pick up the things she dropped. Over the next several weeks, I saw Sarah beaming from having new friends. I saw her classmates beaming from being able to help.

I had never really paid much attention to the phrase “Girl Power” before. But on that first day, within the walls of a kindergarten classroom, I witnessed real Girl Power in action. I knew in that instant that it would be these girls – this whole generation of powerful, nurturing girls – that would use their talents and creative energies to help raise awareness and find a cure for Rett Syndrome.

Girl Power 2 Cure was born.

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We’d like nothing more than for you to join us in our fight to cure Rett Syndrome and free girls around the world who are trapped in their bodies.



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