BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2017 Boston Marathon
EVENT DATE: Apr 17, 2017
Most of you know I have Rett Syndrome. I have difficulty communicating with the outside world and let all y'all know about the things that are important to me. My Dad is running the 2017 Boston Marathon in April to raise money for Rett Syndrome trials going on there now at Boston Childrens Hospital and MIT. This is one of the importanter things to me.
It is so important that we keep the research moving and at a fast pace. Having Rett is not fun i have seizures all the freaking time. I get fed this sugary milk through my belly and there i'm not even allowed to eat bacon. Really as if things were not bad enough.
I will be 17 in a few months which means it won't be long before i'll be flying down boylston street as soon as i'm old enough to participate either with a racing chair or without one....
Catherine Cecilia Christie
RETT SYNDROME ASSN OF MASSACHUSETTS wrote -
Team Rett FundRacers will be raising money for research in hopes that Rett syndrome can be reversed!
Seen almost exclusively in girls, Rett syndrome is a unique developmental disorder caused by mutations on the X chromosome on a gene called MECP2. A rare disease, the incidence of Rett syndrome is about 1 in 10,000 females. The course of Rett syndrome, including the age of onset and severity varies from child to child. As the syndrome progresses, most children lose purposeful use of their hands and the ability to speak. Other symptoms may include loss of motor skills, breathing and cardiac irregularities, seizures, digestive problems, scoliosis, and tremors.
Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome! For more information about RSAM, please visit our website at www.rettsyndromemass.org