2016 Own the Equinox Blog Series

For current Own the Equinox information, click here.

 

Last year we said we needed an Usher Syndrome Awareness Day. Then we went out, and with the help of Senator Wyden and his staff, we got one. The third Saturday in September was declared “Usher Syndrome Awareness Day” and written into the Congressional Record.

Booked my flight to Australia. On Usher Syndrome Awareness day I will be Owning the Equinox with Usher families in Melbourne.

Walking or running isn’t your thing? Well, that’s OK. There are lots of ways you can raise awareness about Usher syndrome.

We live with Usher syndrome, and I mean live with it. Every day it is there, always there.

Last year, throughout the first Own the Equinox campaign, Kate was on the outside looking in. Now, this year, she is ready to step out and speak up.

Today Martha along with her guide dog, Alvin, begin a walking and literary journey over the next 26 days for the Usher Syndrome Coalition’s “Own the Equinox” campaign.

Clare Weigel describes how on March 22, 2013 everything transformed about her, the way she thought, the way she saw the world, and her perception of herself.

Nancy Corderman and Kidz b Kidz are giving a face and a voice to Usher syndrome so we can raise awareness and funds.

Ryan Thomason is a husband, father, runner and a nerd with Usher syndrome Type 2. He describes how his life has changed over the past year because of Usher syndrome.

In honor of Usher Syndrome Awareness Day on September 17th, Bill Barkeley, deaf-blind adventurer, advocate & storyteller, is hiking the Camino de Santiago - 533 miles from France into Spain.

As with Chloe's experience of parenthood in general, life post-Usher diagnosis has consisted of a series of phases.

How many people have we met and how many stories have we shared, and how many times have we cried together, and laughed together and been able to bond with those in our Usher Family whom we never would have met before?

Caroline Brown, Fairbanks Alaska resident and marathoner, passes the marathoning baton to her 6 year old boys for the second Own the Equinox campaign. Galen (with USH 1b) and David will run their own fundraiser with hopes of crushing their mom's performance last year!

Bettina likes to use the words fighters, surfers and brave to describe children with Usher syndrome. She uses the same words to describe their families. Here's why...

Diana is owning the equinox in Mexico. "A new journey is just starting, for our challenge and for our cause. There are new opportunities to witness kindness, to learn something, to change our possibilities, to prove ourselves again that we can do more than we believe."

Life is full of challenges. This is Sarah's. And as we approach Usher Syndrome Awareness Day, reading the stories, learning more, and helping us inspire change is yours.

We could change things because now we were two: two families in one region with all the same doctors. We had the power of our voice to advocate for all families with kids with Usher syndrome in Australia. And so UsherKids Australia was born.

Sophia's thoughts on Usher syndrome: "We need to raise awareness, stand united, educate and find some damn cures. I believe through the Own the Equinox campaign we can do that."

We are all working together to eradicate Usher syndrome from the face of this earth, and we will win.

Here we are, celebrating the second annual “Own the Equinox” campaign for Usher Syndrome Awareness Day. Carol Brill hopes we do not have too many more of these campaigns.

UsherKids Australia was born from hope and the desire to make the journey through diagnosis and treatment easier for the Usher syndrome families that will follow in our path.

Danay's passion in life is to spread awareness of Usher syndrome and advocate for the deafblind community.

It became very clear to Molly at 14 years old that she somehow needed to raise awareness of her condition to educate and inform those around her about how she felt, what she needed and how they could help.

One day Usher syndrome will be no more, our efforts possibly celebrated but then, eventually, forgotten.

This battle with Usher syndrome is never going to be over. Not until we truly have won.

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