Own the Equinox for Usher Syndrome Awareness

August 21, 2017

In 2015, the Usher Syndrome Coalition, with the help of Senator Ron Wyden and staff, declared “Usher Syndrome Awareness Day" as the third Saturday in September, a day that falls near the autumnal equinox in the northern hemisphere. Since then, our incredible community has twice Owned the Equinox, clocking thousands of steps and miles, tweets and posts, all in the name of raising awareness for Usher syndrome, the most common genetic cause of combined deafness and blindness.

The autumnal equinox in the northern hemisphere marks the start of days that contain more darkness than light. It is a powerful metaphor for the threat of Usher syndrome. By Owning the Equinox and spreading global awareness for Usher syndrome, our community has the power, today, to stop our world from sliding into darkness.

Help us Own the Equinox today! 

Why Own the Equinox?

Usher Syndrome Awareness Day and the Own the Equinox campaign are first about raising awareness for Usher syndrome. Awareness helps to increase funding for research. Awareness helps to create a large, vibrant Usher syndrome community. By building a community and gaining global recognition for Usher syndrome we move closer to a cure. 

The fundraising aspect of this awareness campaign also sustains the vital resources the Coalition provides to the Usher syndrome community. We have always been driven to improve the lives of people with Usher syndrome. Here are a few ways the Coalition strives to impact your life:

• If you think that learning about the latest Usher syndrome research is important, the Usher Syndrome Coalition is here.
• If you think meeting others who are similarly dealing with Usher syndrome is important, the Usher Syndrome Coalition is here.
• If you think finding physicians and researchers expert in Usher syndrome is important, the Usher Syndrome Coalition is here.
• If you think collaboration between researchers is important, the Usher Syndrome Coalition is here.
• If you think creating a pool of candidates so we can complete clinical trials is important, the Usher Syndrome Coalition is here.
• If you think Connections Conferences, International Symposiums, and USH Talks are valuable, the Usher Syndrome Coalition is here.

In short, if you value this Usher syndrome community, you need the Usher Syndrome Coalition. 

How to Own the Equinox

Starting Tuesday, August 22nd, join us for this 26-day challenge, culminating in our third global Usher Syndrome Awareness Day on Saturday, September 16, 2017. 

Here's how it works:

WE provide:

• Personalized pages to easily share your #USHEQX efforts with friends and family (create your page here), along with message templates. 
• An Own the Equinox guide.
• Downloadable campaign graphics and Own the Equinox T-shirts to help you design and market your own mile-a-thon, bike-a-thon, bake-a-thon, etc.

And starting August 22nd, YOU:

• Pop outside your house to start your own mile-a-thon and walk, run or bike one mile every day for the next 26 days. Or come up with your own a-thon!
• Show the world how you Own the Equinox for Usher syndrome awareness. Share your efforts on Facebook, Twitter and Instagram using the hashtag #USHEQX. 
• If you're up for a bigger challenge, you can help raise money for the Usher Syndrome Coalition while you raise awareness about Usher syndrome. Simply set up a fundraising page here then share it with friends and family. Ask them to contribute and/or to share it with others.

Our work would not be possible without you and your dedication to introducing the world to Usher syndrome. We look forward to seeing what creative ideas you come up with this year to Own the Equinox! Let's stop the sun from setting on our USH Family.

Submit Your USHEQX Blog Post

The Own the Equinox blog series is a compilation of posts from participants from around the world. They write about their experiences with Usher syndrome and why raising awareness about Usher syndrome - and 'Owning the Equinox' - is important to them. We share different posts from around the world throughout the campaign. (Check out the blog series from 2016 and 2015.)

If you'd like to submit a blog post about how you're Owning the Equinox this year, contact Julia Dunning at j.dunning@usher-syndrome.org today!