Rett Syndrome is a neuro-developmental disease affecting about 1 in 10,000 girls. Every 5 hours a girl is born with Rett Syndrome. The girls develop normally until about 6-18 months of age when they start exhibiting signs of this disease. Rett Syndrome is characterized by continuous hand wringing, loss of functional hand use, loss of speech, and dyspraxia or difficulty in controlling body movements. Rett Syndrome leaves its victims profoundly disabled, requiring total assistance with every aspect of daily living. Although there is no known cure today, it is our belief that research and awareness can bring an end to this devastating disease. Just recently, symptoms in adult mice genetically engineered to have Rett Syndrome were reversed! This gives us more hope than ever that when treatments come, they will benefit all of our girls, regardless of their age. But we need your help!
I couldn’t be more proud to be a part of Team Sparkle’s 6 woman ultra team in Ragnar’s 190 mile tag team running relay race this year in support of Girl Power 2 Cure--a 501c3 organization we call our Rett family that is dedicated to raising awareness and funds for treatments and a cure for Rett Syndrome!
There are 6 of us running 6 legs a piece to cover the 190 mile course from Huntington Beach to San Diego, CA. See course map here: So Cal Overview Map
Each mile we run is dedicated to a girl with Rett Syndrome-a disease that steals her ability to run. We run for our girls, we run because they can’t but because we believe that one day they will! 190 Miles for 190 Girls with Rett Syndrome!
To sponsor Emma in this race: please click here:
Emma Foley is a smart, delightful, funny, and courageous 15 year old girl with Rett Syndrome who awaits your help. Emma was born normally and developed like every other infant until she was about a year old. Then the cruelty of Rett Syndrome began, and Emma’s skills were stollen from her. She was propelled into a body that didn’t listen to her-hands that no longer picked things up, a voice that no longer could speak. Emma went from a toddler on the verge of independence to a child completely dependent on others for every aspect of her daily life. But Emma is remarkable, and she never gives up. She has learned to walk, talk with her eyes, read and be the best big sister anyone could ask for. Her courage and perseverance are contagious and amazing.
So now it’s our turn, we need to raise funds to cure Rett Syndrome. Emma can’t wait decades, she needs help now. Help her achieve the life every child deserves.
Please join me in my fight to cure Rett Syndrome. The science is ready, the time is now, but we need your help to raise the funds.