33% to Goal!
November 30, 2016
BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2017 Boston Marathon
EVENT DATE: Apr 17, 2017
In partnership with the Rett Syndrome association of Massachusetts, I'm running the Boston Marathon to support my daughter and all the other children and their families that struggle with FOXG1. The money you donate will be immediately used by Boston Childrens Hospital researchers to develop a stem cell line from one FoxG1 patient. These cells can then be used to develop cell culture models of FOXG1 disorder that can be used to test new drug treatments. This is one of the most exciting developments in FOXG1 research and gives all of our families hope!
FoxG1 is a rare genetic mutation of the FoxG1 gene that impacts brain development and function. This severe neurologic condition is characterized by seizures, inability to control body movements, and lack of speech. While the spectrum of abilities is quite broad depending on the exact genetic mutation, many of our children cannot walk or talk, and they struggle to communicate their most basic daily needs. It is possible for parents to be carriers, but most cases of FoxG1 are non-inherited and have no family history.