BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: Boston Marathon 2014
EVENT DATE: Apr 21, 2014
Help Me Finish What We Started...
First and foremost this is all about awareness and funding for advancements in a Cure for Rett Syndrome. This fundraising is for Jaidyn and all the girls who cannot run. Your money goes directly to the Rett Syndrome Association of Mass, which is associated with the International Rett Syndrome Foundation (IRSF), a 4 Star Charity Navigator. (visit www.rettsyndrome.org for more info).
Secondly, I'm pissed. I'm pissed about Rett Syndrome and those it affects. I am pissed I trained for last year's Boston Marathon and ran 25.5 miles, less than a mile away from the finish before i was stopped by police. I am pissed some bad people put my family in danger and the horrific memories they will never forget. I'm pissed that Rajat Shah, the Chairmain of the Board for IRSF, told me that we are only doing 40% of the studies we need to do for our girls because we don't have the funding to do more valuable research.
Yet, I am filled with HOPE and surrounded by wonderful friends and family. Please help all affected with Rett Syndrome and help me finish what I started.
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.
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!