Krissy Nowell via Crowdrise
March 04, 2013
BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2013 Boston Marathon
I am the proud teacher of a six year old with Rett Syndrome. She is definitely the best teacher I have ever had in my life. I had never heard of the term “Rett Syndrome" before meeting her. “By learning you can teach, by teaching you will understand”. I didn’t know how to teach until the day I met her. She has taught me to always work hard, try my best, and never give up.
I am a very passionate, enthusiastic, and dedicated special education teacher. I truly love my job and look forward to going to work every day. Last year was my first experience working with a child with Rett Syndrome. My student with Rett Syndrome has had a tremendous impact on my life and has made me more determined than ever to help her and others with this condition. She continues to inspire me to strive for excellence. She forces me to think outside of the box all of the time. We are well connected and share a special bond together; Her eyes tell me that she knows I understand her, believe in her, and I won’t give up on her no matter what.
On April 15, 2013, I will be running in the Boston Marathon for the Rett Syndrome Association of Massachusetts. Running the 117th Boston Marathon is my way of giving back to my student and many others with Rett Syndrome.
Please remember that all donations are tax deductible. You can make your payment online or mail a check to me @ 7 Frank Street, Wakefield, MA 01180. Please make your check payable to the Rett Syndrome Association of Massachusetts. Thank you very much for your support!!
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.
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.
The funds raised through the Boston Marathon will be given to a research project, soon to begin, at MIT. Dr. Li is a postdoctoral fellow in the lab of Dr. Rudolf Jaenisch at MIT.
Modeling Rett syndrome using TALEN technology in human pluripotent stem cells
Dr. Li will establish new models of Rett syndrome using genetically engineered human pluripotent stem cells. These cells will serve as an unlimited source of disease-specific human materials. These cells will be used to study the molecular, cellular, biochemical and electrophysiological aspects of Rett cells and how they react to existing drugs at a very fast pace. Rather than using mouse models which is an arduous process, hundreds of drugs can be tested with these stem cells to see which ones have positive effects. As a result, therapeutic strategies to prevent, delay and reverse Rett progression may be developed much more quickly, giving parents tremendous hope for a better future for their daughters
Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!