how to own the equinox

#USHEQX

We Owned the Equinox again!

On August 23rd, we Owned the Equinox for 26 days leading up to our second global Usher Syndrome Awareness Day on September 17th.

Own the Equinox 2016 Highlights:

Arlington, Massachusetts - Martha Steele and her guide dog, Alvin, took a walking and literary journey during the 26 days leading up to Usher Syndrome Awareness Day. In addition to walking the equivalent of six marathons over 26 days, Martha wrote a daily post about her experiences living with Usher syndrome.

Brandon, Mississippi - Danay Trest created the USH Awareness Bracelet, aka the #USHBRACELET to spread awareness about Usher syndrome and to celebrate the Own the Equinox challenge. 

Melbourne, Australia - UsherKids Australia kicked off the global celebration of Usher Syndrome Awareness Day with Mark Dunning, Chairman of the Usher Syndrome Coalition at an event for kids with Usher syndrome. This event was held at The Royal Children's Hospital and was live streamed around the world.

Manchester, England - Chloe Joyner celebrated Usher Syndrome Awareness Day by hosting an event for families of children with Usher syndrome living in the United Kingdom.

Dublin, Ireland - In Ireland, Carol Brill and others lit a candle on the 17th September. The lit candle is a symbol of support and friendship, saying “Yes, we understand and support the campaign to have deafblindness recognised in Ireland.” #LetThereBeLight

Santiago de Compostela, Spain - Bill Barkeley wrapped up a 533 mile hike from France to Spain, his Camino de Santiago adventure project, to celebrate Usher Syndrome Awareness Day!

Rio de Janeiro, Brazil - There were FIVE Paralympians with Usher syndrome competing in Rio this past summer. Rebecca Meyers - USA/Swimming (brought home three gold medals and a silver, and Owned the Equinox like a champ!), Jack Hodgson-Great Britain/Judo, Katie Kelly-Australia/Triathlon (won gold with guide Michellie Jones!), Amanda Cameron-New Zealand/Cycling and Cyril Jonard-France/Judo)!

Bretton Woods to Hampton Beach, New Hampshire - Last year, Brian Switzer ran his first marathon in support of our first Own the Equinox challenge. This year, Brian was one of six athletes who are visually impaired running in the first Ragnar Relay Ultra team, a 200+ mile relay held on Sept. 16 and 17. 

New York, New York - Rebecca Alexander and Sophia Boccard hosted a "Shine a Light on Usher Syndrome" Art Party on September 17th to raise awareness for Usher syndrome. 

Lafayette, Louisiana - Team USH One See hosted the 1st Annual Fight for Sight 5K & 10K to raise awareness about Usher syndrome in the Acadiana area. 

Fairbanks, Alaska - Caroline Brown of Fairbanks, passed the marathoning baton to her 6 year old boys for the second Own the Equinox campaign. Galen (with USH1b) and David will ran the Equinox Kids' Marathon crushing their mom's performance last year! 

Boston, Massachusetts - Shine a Light on Usher Syndrome

In addition to these amazing Own the Equinox awareness efforts around the world, Kidz b Kidz (KbK) launched the Shine a Light on Usher Syndrome campaign, giving a face and voice to our community through photojournalism and art.

The first goal of this campaign is to raise awareness of the importance of registering everyone living with Usher syndrome in the USH Trust. By doing so, we can all be prepared for the cutting edge research that is coming our way. Of the estimated 400,000 people worldwide living with Usher syndrome, the research community is in touch with less than 1%. We are working hard to change that.

With help from photojournalist Evan McGlinn, Kidz b Kidz (KbK) is compiling portraits of people living with Usher syndrome, accompanied by their personal stories and artwork. Since the launch of the Shine a Light on Usher Syndrome Art Parties, over 50 members of our USH family have been represented in this campaign, culminating in this beautiful awareness video.

Well on their way to achieving their second goal, Kidz b Kidz has raised $32,000 (and counting!) to fund the expansion of the USH Trust. Thank you, KbK

Save the date for our next global Usher Syndrome Awareness Day, Saturday, September 16, 2017!


Own the Equinox Blog Series

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 a different post from around the world every day for the 26 days of the campaign.

Check out our blog series from 2015 and 2016.


What does it mean to Own the Equinox?

The autumnal equinox is the day when daylight and darkness hang in perfect balance, the moment before we in the northern hemisphere slip into darker days. It is a wonderful metaphor for Usher syndrome and the state of Usher syndrome research. We have the power, today, to stop our world from sliding into darkness.

From marathons and hug-a-thons, to mile-a-thons and messages in balloons, the Own the Equinox campaign spans the globe and turns an otherwise typical day into 31 hours in which the world has a chance to meet the Usher syndrome community.

Last year, the Usher Syndrome Coalition claimed the third Saturday in September as Usher Syndrome Awareness Day. This monumental day was even entered into the Congressional Record!  

Starting August 22nd, 2017, we will Own the Equinox again. This 26 day challenge will culminate in a global Usher Syndrome Awareness Day that will start at 8:00 AM on Saturday, September 16th in Melbourne, Australia. This event will span the globe, with families participating in Europe and North and South America, before wrapping up at 8:00 PM in Fairbanks, Alaska. We will take a 12-hour event and make it last for 31 hours, pushing off the darkness for the USH community.

Here's how it works:

WE provide:

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

And on August 22nd, YOU:

  1. 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!
  2. Show the world how you Own the Equinox for Usher syndrome awareness. Share your efforts on Facebook, Twitter and Instagram using the hashtag #USHEQX. 

  3. 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.

USH2017 Sponsors

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