BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2017 Boston Marathon
EVENT DATE: Apr 17, 2017
On April 17, in partnership with the Rett Syndrome Association of Massachusetts, I will be running the Boston Marathon in honor of my sister, Heather, and my friend’s daughter, Melaina. These two beautiful girls represent how far research has already come on Rett Syndrome in our lifetime, and how important it is that we continue to fight for all of the brave girls (and the rare handful of boys!) who are unable to fight for themselves.
My sister is 42, and was diagnosed with Rett Syndrome when she was nine. At the time she was born, Rett Syndrome didn’t yet have a name, let alone known options for therapy and treatments. By the time I was born, Heather had already lost all speech function, and a drastic portion of her motor skills, yet she taught—and continues to teach me—so much.
Melaina is now 8, and was diagnosed with Rett Syndrome at just 18 months. She represents what is possible for the younger generation of girls with Rett Syndrome—demonstrating how beneficial new treatments and therapies can be, and reminding us that if we can continue to drive awareness and funding for this heartbreaking condition, it’s entirely possible that a breakthrough could one day lead to a full reversal in the devastating effects of Rett Syndrome.
Please consider supporting my team’s cause as all donations are tax deductible, and will go directly to the Rett Syndrome Association of Massachusetts to aid in ongoing research.
RETT SYNDROME ASSN OF MASSACHUSETTS wrote -
Team Rett FundRacers will be raising money for research in hopes that Rett syndrome can be reversed!
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