Sunday, June 30, 2013

It's Fragile X Awareness Month!!!!!

Well, here it is - July 1st and that means one really super incredible thing - It's Fragile X Awareness Month!!!  Yay!!

In all honesty - I'm yet to meet a parent of a child with any type of disability who waits until a specific day or month to spread awareness.  The truth is, we do that every single day of our lives.  It's almost like a switched that gets flipped on after we come to grips with the diagnosis.  "Oh, my child has XYZ... I will tell EVERYBODY!"  You chuckle but you know it's true, we just can't help ourselves, we are actually pretty proud of that!

I'm sure there are many proven reasons behind why we do that, none of which I'm willing to Goggle right now.  I'm sure if I did it would include the following:
* We want people to understand our children/loved ones
* We want to know we are not alone
* We want help/support/answers
* We want to raise awareness so that we can help someone else to either get a correct diagnosis, to understand they are not alone or to know their options. 

Mostly, I think it's in our DNA.  Just like Fragile X is in my DNA, so is raising awareness - I just didn't realize it until 10 years ago when fragile x became part of our life. 

So, this is something we do every day.  In the grocery store, at the park, in our schools, at church every place we go we raise awareness. We do it with the clothes we wear, the words we use to explain what others are seeing in our loved ones, the car magnets, or window clings on our vehicles and for some of us - with the images tattooed on our bodies.

My tattoo :-)

This is our everyday.

So why do we need a month?  Or day?   WHY?  Because all year long we are individual voices doing our part sometimes with other families, sometimes with friends and sometimes all alone we do everything we can to help raise awareness.  But... on that one special day (July 22nd)  or Month (JULY!!!) we are one strong, loud united voice a voice YOU can join in with us!  We'll help you, we will give you blogs, facts, pictures - many ways to help!  And, in all honesty, our loved ones deserve this!  

On July 7th 2009, former Congressman (and fragile x champion) Phil Hare (IL) introduced a House Resolution to Declare July 22nd as Fragile X Awareness day - nationally!   Over a year later, on July 21st, 2010 - that resolution was passed!   (even more exciting, if you read the actual the transcripts from the words on the house floor - not just the resolution language -  from both of those wonderful days you'll find my name!)

This year, state Representative Mike Unes had the resolution for Fragile X Awareness day (July 22nd) passed in Illinois!

So, I guess, in a way this is your heads up!  For the next 31 days you are going to learn soooooo much about fragile x related disorders that YOU, too, will become an expert!  You will find ways - all around the country  - that you can get involved!!  You are going to see thousands of voices unite, raising awareness about the leading known cause of inherited intellectual disability and the leading known genetic cause of autism!  You are going to see sooooo many adorable pictures of individuals of all ages living with a fragile x related disorder your heart is going to melt and you will not be able to help yourself from learning more and getting involved!

To top it off - this year, the National Fragile X Foundation has pulled us all together with the "Let 'Em Know" Virtual 5K (#NFXFLetEmKnow for my hashtag friends!) 

Our official 2013 race shirts and bibs!

There are so many awesome things about this event it's hard to know where to start or list them all but - I'm going to try to name a few including:
* This combines not only awareness, healthy living but also fundraising
* There is a $25,000 match that has been offered by an incredible fragile x family!  (**Thank YOU Al and Melissa Blout!)
* You can do it anywhere, any time at any pace! 
* There is a $25,000 match, seriously we raise $25,000 they match it with $25,000!!
*You can walk, run, bike, hike - heck you can swim it if you'd like (but that will be harder to do wearing the cool Let 'Em Know shirt!)
*Seriously, $25,000... TWENTY-FIVE THOUSAND DOLLARS....
*You can start your own fundraising page to help out here and be sure to share it with all of your family and friends to "Let 'Em Know!"
*If you donate $10 and a lot of other people donate $10 that will equal (eventually and way faster than you think!) $25,000 and that will be MATCHED!!! 
*You can donate by clicking here
*Your friends' money will be matched too, up to $25,000 - do you have a friend that would be willing to donated $10, $25, $50, $100, $500 or $25,000 to help us meet our goal (Seriously who wants to meet a goal??  We want to exceed it blowing it way out of the water!!) so that $25,000 of it can be matched?!?!?!  I know you do!!  Even I have $10 to donate!
*You can share this link on your wall (My blog or just the crowdrise link ) and please encourage people to get involved!!
*Your donation will not only be matched (up to the first $25,000 raised) but every donation is tax deductible!

Honestly though, if you'd like to know the very most important reason you should care, get involved, donated, be a part of this extra special month?  I actually have 2...

My children.  Parker and Allison who both have and live every day with the struggles that fragile x brings to their lives.  Everyday.  No exceptions.  No days off or away from it. Every. Single. Day.

Right there are the two most important reasons. So... what are you waiting for?  Get involved today. Spread the word. Raise awareness. Make a donation.  Please, do something.
This is our life.  Fragile X is our every day.  Can't you please take the 31 days of July to help everyone learn more about fragile x syndrome, fragile x associated primary ovarian insufficiency and fragile x associated tremor/ataxia syndrome?

Please?  I know you can do it ~ I believe in you.


  1. Beautiful picture of the kids!

  2. Great post to start off our month of increased FX awareness. I even quoted you when I got around to posting tonight ( which I figured would be ok :-) -- Faydra