On the inside, Colleen is a regular 9 year old girl. She is smart, funny, and kind. Colleen loves school and her friends and has an affinity for shopping, especially for new clothes and purses! She likes to be with her sister and finds her little brother loud and annoying.

The "normal" ends there. She cannot talk or walk on her own. She needs help to eat, do school work, go to the bathroom, and communicate with others. Everything takes a long time, and she works hard to do it all. She is exhausted and Rett Syndrome is still beating her down with seizures and scoliosis.

This past year has been particularly trying. Diagnosed with seizures, Colleen is on her third medication, having experienced strong negative side-effects with the first two. Additionally, her scoliosis has worsened, necessitating the use of a special supportive chair to sit up in class or to sit at the table for meals.

This is where you come in. Your donations make a difference, funding a wide range of research, from animal models to stem cells (non-embryonic) derived from individual girls with Rett, to clinical trials evaluating drugs targeting specific symptoms of Rett Syndrome.

You may not know it, but Rett Syndrome is as prevalent as ALS (Lou Gehrig's), Huntington's disease and Cycstic Fibrosis -- diseases you have heard of! Tell someone about Rett Syndrome. Let's make it a household name.

The bottom line is this. This disease was identified in the US for just 30 years. In the last 15 years, the specific gene has been identified and they have demonstrated that if you have a mouse with Rett and fix the gene, Rett Syndrome goes away. We fund research today and tomorrow Colleen starts walking, talking, living a normal life. It's not science fiction. It's science. You are a key part of it.