BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2015 Boston Marathon
EVENT DATE: Apr 20, 2015
Team Rett FundRacers will be raising money for research in hopes that Rett syndrome can be reversed!
I am running for my daughter Samantha Jane. Sammy was diagnosed with Rett syndrome when she was 16 months old. She is now 7 years old and in the first grade at Peirce elementary school in West Newton. Sammy can not walk, talk or purposefully use her hands. But she remains one of the happiest, sweetest seven year olds I know! Her smile and laugh are infectious and can light up a room. I am inspired by her patience and determination every day and this is why I am taking on this challenge of running the Boston Marathon. We run because they can't and together we can CURE RETT!
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.
Although Rett syndrome leaves all girls and women dependent on others for all of their basic needs, tremendous advances in research have been made since the MECP2 mutation was discovered in 1999.
Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!