BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2017 Boston Marathon
EVENT DATE: Apr 17, 2017
Dear Family & Friends,
I join my dear friend Jenn this year as we train for Boston and raise money to help her daughter Abby and other Rett Angels who live with Rett Syndrome. I have become very close to Jenn, Matt and their three children Matthew, Molly & Abby. Jenn & I ran the Falmouth Road Race in August and I was lucky enough to see Matt & Abby take off with Team Hoyt and other individuals with disabilities from the starting line. Abby's smile was priceless!
Please join me and support research to help reverse Rett Syndrome. There is more information below about Rett & the research projects selected for last year's marathon fundraising efforts.
We greatly appreciate your support. Jenn & I are grateful for your generousity and we will continue to give it our all during our 5 a.m. training runs through the streets of Metrowest Boston. Heartbreak Hill....here we come!
All my love, Beth
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.
Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome! For more information about RSAM, please visit our website at www.rettsyndromemass.org
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.
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."