Own the Equinox: Don't Let the Sun Go Down on USH

Own the Equinox: Don't Let the Sun Go Down on USH

August 3, 2015

by Mark Dunning

We said we need an Usher Syndrome Awareness Day and we got one! Thanks to the efforts of Senator Wyden and his staff, the third Saturday in September as “Usher Syndrome Awareness Day” was entered into the Congressional Record. Senator Wyden went to great lengths to describe the condition and urged his colleagues to support the efforts of the Usher Syndrome Coalition “to raise awareness about this devastating disease.” Thanks to Senator Wyden, Thomas Brunet, and Lindsey Stanford for making this happen!

Now that we have the support of the United States Congress, we need to make the most of it. Finding a cure for the most common form of combined deafness and blindness was once believed to be impossible. On Usher Syndrome Awareness Day, let’s Own the Equinox and demonstrate the power to make the impossible possible.

On September 19th, let’s keep the sun from setting on this Usher syndrome community. Quite literally. Let's push off the darkness. Let's make September 19th last longer than 24 hours. Let's make that impossibility possible.

How? Well, our Own the Equinox campaign is going to start at 8:00 AM, September 19th in Sydney, Australia. It is going to follow the globe, with families participating in Asia and Europe, North and South America, before wrapping up at 8:00 PM in Fairbanks, Alaska. So we’re going to do the impossible. We’re going to take a twelve hour event, 8:00 AM – 8:00 PM, and make it last for 31 hours.

So join us, wherever you are. Hop up at 8:00 AM September 19th and start tweeting (#USHEQX), blogging, posting on Twitter, Facebook, Instagram, etc. Let the world know about Usher syndrome. Let’s Own the Equinox. Let’s make the impossible possible. Sign up here.

And watch this space. We’ll be sending out more ideas on how you can help us Own the Equinox soon.