Own the Equinox #USHEQX #Sept19

So this little thing that I'm a part of called the Usher Syndrome Coalition is putting together this little fundraiser for this little (what the professionals like to call "orphan") disease. Orphan is such a sad word, I wasn't the least bit impressed when I heard that Usher Syndrome is an orphan disease. But I guess no one consulted me.

Running has never really been "my thing" although, on various occasions, I have tried to make it just that. I'll run a 5K here and there (dying by the end) for various causes, and when I was in a boot camp after I had Hunter, our trainer actually had us up to 7 miles on the weekends. That was pure craziness and I haven't even made it to the 4 mile mark since that time when Hunter was 9 months old. I don't run because I enjoy it, I run because it's a form of exercise that doesn't require much. No weights, no mats, no instructors... just the open road and good music.

 

As Mark stated in a recent blog post, the Usher Syndrome community kept saying- We need a global Usher Syndrome Awareness Day. And it's been done. It will be the third Saturday in September, every year, beginning this year, until Usher Syndrome is history and Usher Syndrome Awareness Day becomes a simple reminder of the great things an energized community can accomplish!

 

Since Day 1, our entire family has been trying to make Usher Syndrome common knowledge. We have been spreading the word, educating others, and trying to make it a priority.

And I'm excited to say that my priority every day for the next (now 24) days is my mile-a-thon.

The goal of this fundraiser isn't even to fundraise (although every penny counts)... it's to SPREAD.THE.WORD.

 

So if you want to be a part of this soon to be revolution, if you want to be a part of the cure- just follow our journey. Talk about our journey. Spread our purpose far and wide. SHARE our pictures, SHARE our posts. You never know who might see your two second effort. Or who might overhear your conversation about this #OwnTheEquinox thing you're friend of a friend of a friend is taking part in for her son.

 

We don't want your money (we need it) but what we do want, and want the most-- Is your support. Your words are more valuable than your money. Spread the word. Spread awareness.

Be the cure.

 

Below are my recent instagram posts (username: ebfoeshay)

Feel free to follow me, repost, or follow on our Angelic Ears and Eyes facebook page.

I will start updating that page with this post and my daily posts from here until September 19th. And if you don't want to see so many posts, feel free to unfollow until after the run! :)

 

Day 1 (New Iberia, LA): My mile-a-thon journey to 26.2 by September 19th. And I promised I would document my daily runs. So here we go @ushcoalition #OwnTheEquinox #USHEQX #ushfamily

 

 

Day 2 (The Gym of New Iberia, LA): I really do despise running. But hey, I'm here. #USHEQX #OwnTheEquinox #ushfamily @ushcoalition

 

And here is the link if you think man, I really would love to contribute a little because I know it would go a long way. Click here:

https://usher-syndromeorg.presencehost.net/take-action/own-the-equinox-fundraisers/elise-faucheaux.html

 

And for those of you in the Lafayette area who are interested, we will be joining Cece Hebert's team (because her parents are way more on top of this whole thing than I am!) on September 19th in Girouard Park to complete the last 1.2 miles together. Contact me for more details. Anyone can join for free. Walk/run/bike/jump rope... bring your kids, bring your dog, bring your grandmaw.

 

Love-

The Faucheaux Family

 

7th Annual Usher Coalition Family Conference

The man in the picture below, Mark Dunning, Chairman of the Usher Coalition I might add, thinks and truly believes he is just a regular guy.

 

 

I hope one day he realizes that he is FAR FAR FAR more than just a regular guy. He says the only thing that sets him apart is that he has a daughter with Usher Syndrome. Which couldn't be further from the truth.

He may, at one time, have been a regular guy. But he was a regular guy with an extraordinary vision, a lot of determination, and a caring heart. He set out starting the Decibels Foundation, which lead to The Usher Syndrome Coalition, (anyone recognize that face on the Homepage?) which has close to 1,000 members from countries far and wide. Plus he has a full-time job. And instead of vacations to the beach, he uses his vacations to visit research facilities, and to speak on behalf of the people with Usher Syndrome, spreading awareness, educating others about the advancements in treatments and clinical trials, and offering support and resources to people trying to cope with the emotional and physical effects from Usher Syndrome.

The fist time I met Mark in person was at the Usher Syndrome Coalition's Family Conference in St. Louis just 2 months after we got Hunter's Usher 1C diagnosis. After I introduced myself, he remembered our email correspondence and asked how old Hunter was. I said 16 months, and I will never forget his response-- "You guys have nothing to worry about, he won't even be affected by the vision loss". I think his response was a combination of his true optimism towards a cure for Usher Syndrome, and a deep faith and hope that if he continues repeating it to himself and others, that it will eventually come true. Although we aren't 'blind' to the fact that he's already 4 years old and there are no clinical trials in place for Usher 1C, I know that there are numerous people out there who are working day in and day out as far as humanly possible, to make it happen.

Mark recently wrote a blog post that really touched me. As I'm sure it did the entire Usher community. He isn't just a regular guy. He's a talented and touching writer, and an inspiration who it at the forefront of this grass roots effort to find a cure. Don't worry Mark, that's what we all want for Hunter... as well as every individual affected by Usher Syndrome around the world.

Since the family conference was in New Orleans this year, we had the pleasure of bringing both of our boys and having some of family members attend as well. My Aunt Kathleen Blanco, former Governor of LA gave the welcome speech, which was very inspiring to everyone. My parents, Blair's mom and his Aunt, Uncle and cousin were there as well.

And as you can see below, Hunter was VERY proud to be on the Coalition's new banner! Our photographer, Kent Fleming, really does an amazing job at capturing the most captivating shots!

We are so blessed with such a supportive network.

Thank you to all of you who supported our conference in so many various ways. Your kind words, your donations, your thoughts and prayers are always appreciated.

 

Elise