lori mitchener via Crowdrise
April 02, 2012
BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2012 Boston Marathon
EVENT DATE: Apr 16, 2012
This is my second running of the Boston Marathon for Team Rett. Last year we raised enough money for the trial to get started, and this year we need to keep phase II going! I run for Ava and Juliana, twin 7 year old Rett Heroes. These two girls, and their family, have taught me so much about love, patience, strength, and hope.
Thank you to everyone who donated last year, and those those that will this year. Running is easy, battling Rett is not, so let's raise 5,000 at least and let's do it in honor of Eric. Ava and Juliana lost their Dad, Eric, this summer. Eric was an exemplary father, and a staunch advocate for Rett research. So while I say I am running for him, just as I hope you donate in his honor, he would be the very first to correct me when I say this one's for Eric. He would say, "No, this one is for all the Girls!"
RETT SYNDROME ASSOCIATION OF MASSACHUSETTS INC wrote -
Team Rett FundRacers will be raising money for the very first clinical trial of the IGF1 growth hormone currently underway at Children's Hospital Boston 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.
This IGF1 groundbreaking clinical trial, now being conducted by Dr. Omar Khwaja and his team at Children's Hospital Boston, is the first disease-modifying therapy to be tested on girls with Rett. Greeted by an outpouring of enthusiasm from the Rett syndrome community, this trial is giving families enormous hope for a brighter future.
Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!