Spread the Word. Be the Cure. | Own the Equinox, Day 7
August 31, 2015
by Elise Faucheaux
Elise Faucheaux is 31 years old and currently lives in New Iberia, Louisiana with her husband Blair and their two sons, 4 year old Hunter and 20 month old Harrison. Elise serves on the Board of Directors for the Usher Syndrome Coalition and writes regularly about her experiences raising her son Hunter with Usher on her blog, Angelic Ears and Eyes.
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 19) 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 your 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.
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! :)
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.
And for those of you in the Lafayette, Louisiana 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.
The Faucheaux Family