In 2015, the Usher Syndrome Coalition declared the third Saturday in September as our global “Usher Syndrome Awareness Day.” It was even entered into the Congressional Record!
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).
Usher syndrome can be a terrifying diagnosis. It shouldn’t be a complete mystery to newly diagnosed families. They should know that they are not alone. They should know that Usher is not a death sentence. They should know about all the success stories that exist in this Usher syndrome community. We want the world to know about Usher syndrome so the diagnosis is easier on families, so they never feel alone.
We need a global Usher Syndrome Awareness Day. Our governmental officials should know about Usher syndrome. They should know the impact of the disease, both on individuals and on governmental finances. They should know that Usher syndrome will cost much less to cure than it does to provide services. They should know that people with Usher syndrome are smart, capable, hard working, motivated and want to be contributing members of society. We want our government officials to know that there will be high return on the investment in finding treatments.
We need a global Usher Syndrome Awareness Day.There are philanthropists out there who are looking for a good cause to support. They should know about Usher syndrome. They should know about this community we have built, about the people we are, and about how much their dollars could help. We want good-hearted philanthropists out there to know that they could make a huge impact on the world, that they can contribute to curing the most common cause of combined deafness and blindness.
We need a global Usher Syndrome Awareness Day. The world should know what we can do for ourselves, that we are capable of great things. The world should know that we are fighters, that we will never give up, that we believe in making the impossible possible.
We need a global Usher Syndrome Awareness Day. And we are going to have one. It will be the third Saturday in September, every year beginning in 2015, until Usher Syndrome is history and Usher Syndrome Awareness Day becomes a simple reminder of the great things an energized community can accomplish.
Join us. Together, we can make Usher syndrome common knowledge. Together, we can make Usher syndrome a priority. And together, we can make Usher syndrome history.
