BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2017 Boston Marathon
EVENT DATE: Apr 17, 2017
I am writing to ask that you consider supporting me and Team Rett in running the 2017 Boston Marathon.
Since 2012 Matt and I, with all of your help, have been avid supporters of Rett Syndrome research on behalf of Abby and all the other Rett Angels out there. Our work continues …
Funds raised will go directly to the Rett Syndrome Association of Massachusetts, a group which Matt and I have been involved with for many years.
Funds from the 2016 Marathon Efforts went to support the following two projects:
- Timothy Hammond, Ph.D., at Boston Children’s Hospital / Harvard Medical School. Research on the understanding the role that MeCP2 plays in a population of brain cells known as microglia. This is an exciting new area within the field, and Timothy’s work has added significance in that he is studying how IGF-1 impacts the ability of normal and mutant microglia to support the survival and function of neurons in mouse models of Rett Syndrome.
- Michela Fagiolini, Ph.D., at Boston Children’s Hospital / Harvard Medical School. Focused on strategies to compensate for reduced neurotransmitter levels present in the central nervous system of Rett Syndrome patients by stimulating two specific (and related) receptors present on neurons. In the study, she will be testing the ability of a number of both these receptor modulators to delay and treat cortical neuron regression in mouse models of Rett syndrome. The ultimate goal is to develop new drug candidates that target these receptors for clinical use.
Previous funds raised via the marathon team has gone to support the IGF-1 clinical trial at Children’s Hospital Boston, a trial which Abby sought enrollment, as well as research in world-class laboratories at MIT and Harvard.
It has yet to be determined to what research projects funds from the 2017 marathon will be dedicated, but Matt and I will be involved in that process.
Crowdrise charges a nominal administrative fee to process donations. If you would like to avoid this, please feel free to send a check direct to me, at 45 Cider Mill Rd, Sudbury, MA 01776, made out to Rett Syndrome Association of Massachusetts (or "RSAM" for short). RSAM is a 501(c)(3) charitable organization, and your donation is tax deductible.
In closing, please read the following comments made by Dr. Rett years ago to parents and professionals dealing with Rett Syndrome:
"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."