The autumnal equinox marks the start of days that contain more darkness than light. It is a powerful metaphor for the threat of Usher syndrome, a rare genetic disease that affects my family personally. My 5 year old, Galen, was diagnosed with the most severe form of USH at 18 months and since then, we've lived with the challenges of his profound deafness, balance problems, and decreasing vision. But we've also found a global family of individuals with USH, and we've found hope in the increasing possibilities of a treatment and cure. We need to keep that momentum going!
In honor of the first global Usher Syndrome Awareness Day on September 19th, I'm running the Equinox Marathon in Fairbanks, Alaska. I'll be joining hundreds of my USH family around the world to raise awareness of this devastating disease and money for continued research.
Help me own the Equinox. Together, we can make Usher syndrome history. #USHEQX