Courtney Railton via Crowdrise
March 02, 2012
BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2012 Boston Marathon
EVENT DATE: Apr 16, 2012
I truly thought my marathon days were over! That was until I went to a fundraiser for Rett Syndrome and learned more about this disorder, its affects on families and heard how hopeful researchers are that Rett Syndrome can be reversed. Rett syndrome is a neuro-developmental disorder seen primarily in girls and women. Please take a few minutes to watch the video on my page and you will see for yourself how this disorder affects these girls and their families.
I am running the Boston Marathon in honor of 12 year old Caroline Joyce. Caroline is the daughter of our friends Jane & Mike Joyce. All the monies raised through my efforts in the Boston Marathon will be donated directly to the first clinical trial of the IGF1 growth hormone now being conducted at Children’s Hospital Boston. Initial results have been very promising, so Jane & Mike are very hopeful this will help Caroline in the near future.
Thank you for considering a donation to this worthy cause and see you at the finish line!
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!