Please help me support Girl Power 2 Cure in their efforts to raise funds for research for Rett Syndrome. This is my 8th year running with Team GP2C to raise funds for Rett Syndrome research. I have done two half marathons and six 10Ks, so I decided this year it was time to do something NEW. This year I am running the 5K and bringing Allison along with me!! This will be Allison's first year as a running member of Team GP2C!
We have a lot of training to do to make sure that I can push her 115 lbs through the Disney course, but I am sure that Allison is going to LOVE IT. We will both be offical Run Disney participants and she will get her very own medal when we cross the finish line. I can't wait!!
Why do we run? Allison was diagnosed with Rett Syndrome at just 2 years old. Our lives had a major change of trajectory as we learned how to live on our new path. Now that Allison is an adult, I can look back and see how far she has come on our journey. She has participated in a clinical trial, and this past year has been one of the most exciting years ever for Rett Research. The first drug to treat Rett Syndrome was FDA approved and they have officially started gene therapy trials, which could actually result in a CURE for Rett Syndrome. Since Rett Syndrome is classified as a rare disease, none of that research would be happening if Rett families and people like you weren't there funding the research!
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.
Your HELP is our HOPE!! Thank you for your support,
Love, Robin & Allison