My niece Caroline Joyce and her family have been fighting a battle for eleven years. The battle is called Rett Syndrome, a rare neurological disorder that primarily affects little girls.
Because of the rarity of this disorder, it has not been given adequate attention by the pharmaceutical and biotech industries. Instead it is an academic challenge. Over the past three years, through the hard work and dedication of many, much progress has been made in the way of research. I wish I could articulate the support my family has received from its friends. And it has made a difference. So I am reaching out to you to support this effort and continue making progress to find a cure.
Running the Boston Marathon has been on my “To Do” list for a long time. Over the years I have cheered on runners and felt a lump in my throat witnessing the causes that drive many of them. Training for such a strenuous event requires motivation, dedication and a cause. And I wasn’t sure I would ever have that until now. And I couldn’t have a cause dearer to my heart than my niece Caroline.
On April 16, 2012, I will be lacing up my sneakers and crossing this event off my “To Do” list for the cause of Rett Syndrome and Caroline.
Caroline’s parents Mike are Jane are special people. They are always helping others and it is very difficult for others to reciprocate. If you would like to give back to a family that does so much for others, please support me in the 116th running of the BM.
My word for 2012 is “Believe.” My children say: “If you believe, you will achieve!” This spirit will get me across the finish line and help us take one more step closer to finding a cure.
This one’s for the Girls!!! Thank you for your friendship and your support.
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!