BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2015 Boston Marathon
EVENT DATE: Apr 20, 2015
Five years ago my friend Laura sent me a note asking if I knew anyone who would run for the girls; for her girls, Ava and Juliana. Of course, I said, yes I do, and a bond was forged, in sweat, pride, and tears. Not heat, polar vortices, nor cowards have detered me from running for Team Rett, for All The Girls.
Five years has brought clinical trials and great success in reversing Rett. Yet, we still have no cure so I run again. The Rett parents are unconditional love embodied and raising awareness and money to help their girls is my calling. This year my goal is to raise awareness awareness and run the Boston Marathon dressed as a Rett Angel, and spend 26.2 miles honoring the girls and showing everyone that I will run until they can too.
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!