I'm running my first half marathon to raise awareness and research funding to cure Rett Syndrome. Please help us defeat Rett Syndrome!

Rett Syndrome is a neurological affliction that affects a new born every 90 minutes. Around 18 babies are born with Rett Syndrome every day! This affliction is so cruel because your baby seems to be completely normal at first but by the age of 1 or 2, most or all of their abilities that they've learned are lost. They can no longer use their hands well instead spending all of their time wringing, clapping, or putting them in their mouth. As time goes on, uncontrollable seizures my start, breathing patterns and heartbeats become irregular, and severe scoliosis may set in. Yet despite all of these terrible things that happen to them, these girls continue to smile.

Advancements in technology have now shown that these non-verbal, severely physically disabled children are intellectually intact! The discovery of the Rett gene has allowed researcher to discover that the damage may be completely reversible! Treatments are being trialed but these clinical trials are very expensive. We need help to keep the research going and to get these trials done so that we can unlock our children from the bodies that trap them!

For those of you that know me, I have never run a long race before. I used to be a gymnast but never did a sport that required endurance. So why am I doing this? Because I hope to show you that I can push myself to do this and motivate you to push yourself to help my sister, Stephanie, who has Rett Syndrome. She has spent the last 19 years suffering from Rett Syndrome. I want to help the scientists find the cure so that my sister can sing a song with me, tell jokes and secrets with me, and to hear her tell me that she loves me as much as I love her.

If you or someone you know does annual charitable contributions, please consider donating here now for this year's donation and again in 2013 for next year's donation. All donations, large and small, will really help us. Your donations are tax deductible using tax ID 21-8011668 for Girl Power 2 Cure. Please help my sister Stephanie and the thousands of people that deserve a cure and a 2nd chance at a normal life!

Join the Conversation

...

Organization Information

  • Name

  • Phone

    904-875-4810
  • Address

    2891 BREAKERS CT
    AMELIA ISLAND, FL 32034
  • EIN

    208011668

2 Fans

Also fundraising for this cause