BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: Boston Marathon 2014
EVENT DATE: Apr 21, 2014
Since Abby was diagnosed with Rett Syndrome less than two years ago, you have donated more than $38,000 to either of the International Rett Syndrome Foundation, the Boston Children's Rett Clinic or the Rett Syndrome Association of Massachusetts. For that, Jennifer and I are eternally grateful.
There has been tremendous progress made since the genetic cause of Rett Syndrome was identified in 1999, with much of that made in the past few years, which you all have literally helped make happen! To wit:
Children's Hospital Boston - Dr. Walter Kaufmann (Abby's doctor) is launching Phase II of the IGF-1 Clinical Trial. Pilot results of Phase I revealed an improvement in general behavior, mood, hand function, and in general improved quality of life, the latter of which is a power review criteria for the FDA.
Baylor College of Medicine - The drug NNZ-2566 has been tested for safety and Phase II will begin shortly, testing for improved/restored neurological function in our girls.
Whitehead Institute at MIT - This study led by Yun Li, PhD has redefined the function of the MECP2 Gene, which bears a mutation in Rett Girls, and is pushing research forward on that front.
Incidentally, the Rett Syndrome Association of Mass. was the primary fundraiser for Dr. Li's study, using funds raised from Boston Marathon 2013 fundraising. About 15-20 of us Rett parents, and our girls, met Dr. Li at a gathering a few days before the marathon. She'd never met a girl with Rett ... it was all just a lab experiment for her until then. It was a very touching experience.
We're back to ask for any donation you are willing to make in support of Rett Syndrome research benefitting Abby and those girls like her. Your money, I assure you, is being put to good use.
All donations are tax deductible and can be executed electronically on this website. However, Crowdrise does collect a small administrative fee. To avoid that, you may send a check to me, at the address below, made out to the Rett Syndrome Association of Massachusetts.
45 Cider Mill Road
Sudbury, MA 01776
In closing, please take a moment to read the words of Dr. Andreas Rett, who is credited with identifying Rett Syndrome in 1954.
"These three words summarize best our task: To live, to love, and to learn. We are aware of the fact that many mysteries of this syndrome still remain undisclosed, and therefore, for the time being, we have no option but to live with it. However, the children with their very special ways give us enough impulse to share their lives. It is a further mystery of this syndrome that the affected children render it easy for us to love them. A dominating factor in the care of such children is that they understand us and we understand them. Their appearance and the sparkle in their eyes make it easy to love them. Daily care for them and working with them gives us grownups strength, enabling us to learn the special treatment required, thus furthering our own development. To live with them, to love them and to learn from them are the rudimentary principles of our work."
Matt & Jenn Seney