Each year the USH Connections Conference reminds those in the Usher community that they are not alone, empowering families with knowledge about Usher syndrome and current research efforts. One consistent request is for more time to socialize and connect with others. This new series of events is our response.

All in the Usher community are welcome to attend the New England “USH Local Social.” This includes individuals with Usher syndrome, parents of children with Usher syndrome, spouses, family members, etc. The Usher Syndrome Coalition is hosting this event in collaboration with the Usher Syndrome Society, a nonprofit that uses storytelling through the arts, educational events, and collaboration to raise public awareness and research funds towards finding treatments and a cure for Usher syndrome. This event will allow individuals and families to gather and participate in various "Master Classes" led by individuals with Usher syndrome.

PLEASE NOTE: The deadline to submit requests for ASL interpreters is July 1, 2023.

The autumnal equinox marks the start of days that contain more darkness than light. It is a great metaphor for the threat of Usher syndrome. We want to Own the Equinox, claiming the third Saturday in September as Usher syndrome awareness day. But to do so, we need your help. We want this to be a worldwide event that starts on one side of the world (we're looking at you, Australia) and runs around the globe to the farthest point before the international date line (that’s your cue, Alaska).