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. Thanks to the support of all our friends, we are now hopeful we will have the first gene therapy clinical trial launched in the next 6months! We can do this together!
Running and Rett Syndrome go hand in hand for The Foleys.
Allison started running in 2011 to raise awareness and research dollars for Rett Syndrome. But soon running became a personal love not only for Allison, but also for Emma. She loves spectating at races but also racing herself! She has been lucky enough to have amazing friends that want to run and race with her.
This Sunday, Charlotte Lundell, a junior at Orange High School running on their Varsity XC team, is tackling her very first half marathon, not alone (which is hard enough) but pushing Emma in her running chair! This will be Emma's 2nd half marathon. She completed her first with Charlotte's older sister, Lucy in 2017.
You can make a difference in the lives of all the girls with Rett Syndrome by supporting this amazing duo!
Emma Foley is a smart, delightful, funny, and courageous 18 year old woman 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 person 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.