2015 Own the Equinox Blog Series

For current Own the Equinox information, click here.

 

On September 19th, we want to Own the Equinox. We need a global Usher Syndrome Awareness Day and we're going to have one.

We need to cure the most common cause of combined deafness and blindness. And we can do it. On September 19th, Usher Syndrome Awareness Day, let’s demonstrate that power to make the impossible possible.

Did you know that regular exercise may actually help you keep your vision longer?

Finding treatments for the most common cause of combined deafness and blindness is extremely difficult. It seems insurmountable. But is it?

You want people to know about Usher syndrome, to understand it, to fund it, to cure it. But, boy, that mile a day seems like a lot of effort. You really just don’t feel like getting off the couch.

Maybe running isn’t your thing. Or maybe you have an idea of your own. Go for it! Create your own a-thon and help us Own the Equinox.

It’s time for our grassroots efforts to go global. Let’s make our Usher Syndrome Awareness Day span the world. You can help in ways big and small. We have a size that fits you and whatever you give will help.

Caroline Brown, Fairbanks resident, marathoner, and most importantly, mom to Galen (5) who has Usher syndrome—provides an initial glimpse into her world of running the Equinox marathon as a fundraiser for Usher syndrome research.

Dave is the father of two children, the youngest has Usher syndrome. The family live in Melbourne, Australia, where Dave will run a marathon on 19 September for Usher Syndrome Awareness Day.

Every day, a person with Usher syndrome faces numerous obstacles. Despite this, Jessica refuses to let anything stop her.

In honor of Usher Syndrome Awareness Day on 19 September, Molly wants to show the world what our community looks like.

Since Day 1, Elise and her family have been trying to make Usher syndrome common knowledge.

Moira Shea can see the treatments coming. They are just ahead of us. Usher syndrome will fade away as our vision for a cure remains strong. So set the challenge for September 19th and own the equinox, when the world goes more into darkness than light. The light will come back.

Carol Brill refuses to remain invisible as she passionately raises awareness for Usher syndrome and campaigns the Irish government to recognise deafblindness as a unique disability.

In the build up to Usher Syndrome Awareness Day, Chloe is tweeting excerpts from a love letter that she is writing to her daughter, about the hopes and dreams she has for her in spite, because and in the face of Usher syndrome.

Rachel Chaikof advocates for change from Cameroon for Usher Syndrome Awareness Day.

Bettina Kastrup Pedersen works with children with Usher syndrome in Denmark. She describes these kids in three words: surfers, fighters and brave.

With the autumnal equinox only two short weeks away, we need this Usher Syndrome Awareness Day. We need to Own the Equinox, push back the sunset, accomplish more than anyone thought possible.

Ryan Thomason was diagnosed with Usher syndrome when he was 27 years old. On September 19th, the world's first Usher Syndrome Awareness Day, he will run as far as he can in order to Own the Equinox.

Anne Jalakas is a journalist at the National Resource Centre for Deafblindness in Sweden. She is helping raise awareness for Usher syndrome and the entire deafblind community.

Markku from Finland wants to spread awareness of Usher syndrome and tell the world that a person with Usher can manage fine in life.

Danay shares how she has handled her diagnosis and how she endeavors to raise awareness for Usher syndrome from Brandon, Mississippi.

Lorne Marin describes how he deals with his diagnosis on a daily basis and his climb to raise awareness for Usher syndrome: “I don’t always like climbing. I always like having climbed.”

On Saturday, September 19th, in honor of Usher Syndrome Awareness Day, the Rose Family will walk together in hope – because we do have much to hope for.

Dominique is working to create an Austrian Usher Community, connecting it to the worldwide Usher Family and to international experts of Usher syndrome. To her, raising awareness means giving hope to people with Usher syndrome and their families.

Caroline Kaczor describes her unique connection to Usher syndrome and her best friend, Rebecca Alexander.

Rebecca Alexander reflects on her path towards self-acceptance. "Having Usher syndrome humbles me not just every day but often every hour and sometimes even by the minute."

Brian Switzer has a deep love for running. He also has Usher syndrome. That won't stop him from running one of the world's most difficult marathon courses on Usher Syndrome Awareness Day.

Diana lives in Mexico City and has Usher syndrome type II. She has become an active member in the Usher community and aspires to do so much more for others with Usher syndrome, both globally and locally.

Collin helped create Ushersyndroom.nl, an organization working to raise awareness and fund treatments in Holland. Collin also has Usher syndrome type 2a.

Ramona Rice has a strong desire to make a difference as a proud "Usher Chick" and feels genuinely blessed to be one of Usher Syndrome Coalition's members.

Powered By Firespring.org