BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: Boston Marathon 2014
EVENT DATE: Apr 21, 2014
Family and Friends:
You are all very important to me and I appreciate you taking the time to consider donating to this very special cause. Most of you know that in 2009 our lives were turned upside down when our daughter Avery was diagnosed with Rett syndrome.
While Erica has fully immersed herself with all things Rett (Program Coordinator at Katie's Clinic for Rett syndrome at Children's Hospital Oakland), I have been less involved-at least publicly. Well, not anymore!
I am joining Erica in running the Boston Marathon to raise money and awareness. I accompanied Erica this past year and it was quite an experience as you might imagine. I have already begun my training and Avery is my motivation.
She is such a special girl. Although her skills are very limited, she is a sponge and she gets it. It might sound a little corny but I hope to one day be able to "squeeze" that sponge.
There is hope! Research is advancing very quickly, clinical trials are happening now -- please help me reach (and hopefully surpass) my goal of $5000.
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!