BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2012 Boston Marathon
EVENT DATE: Apr 16, 2012
Dear Family and Friends,
As most of you know, I love to run. :) This April, I will be running in the 116th Boston Marathon. It took a lot of sweat and miles to get into this race, and a lot more as I train. I can't think of a better purpose though than to run for a cause.
In terms of on-site media coverage, the Boston Marathon ranks only behind the Super Bowl as the single largest sporting event in the world. With over 500,000 spectators on the course, it is a great opportunity to promote awareness for a worthwhile cause. Geared in Team Rett attire, I will be running to raise awareness and funds for Rett syndrome.
Rett syndrome? Rett is a rare disease mainly affecting young girls, which leaves all children and women totally dependent on others for their basic needs. While there currently is no cure for Rett, hope is on the way.
I am raising money on behalf of Team Rett for research that could lead to a cure for Rett syndrome. Children’s Hospital Boston is now conducting the first clinical trial of the IGF1 growth hormone, giving families enormous hope for a better future.
Our dear friend's daughter, Jaidyn, has Rett and I can only imagine what this research could mean for her and her family. I am running for this cause because I know a lot about Rett through them, and I know how it can affect a child's life.
Everyone has a budget and wallets are tight, but any help towards this cause would be greatly appreciated. All funds raised will go the Rett research being conducted a Children's Hospital Boston.
Team Rett gave me a goal of $1,000 to raise by race day (April 16th). I am hoping to squash that. And so, I am asking if you could please help in any way with a donation... and for those that love to FB, tweet, text, and email, please feel free to pass the link to this page along.
P.S. To read more about Rett and the research trial underway, please read what the Rett Syndrome Association of Massachusetts 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.