Fragile X is a single gene mutation on the X chromosome. You can google all the science-y stuff if you want, but here's what you should know about it:
We think about 100,000 Americans are affected by Fragile X, boys are more affected than girls and therefore more often diagnosed. There are over one million carriers.
Laurie is a carrier and had no idea until Casey was born and diagnosed. We call it the Fragile X premutation and it can sit quietly for generations before a child is affected, like Casey.
The easiest way to explain Fragile X is that it's a lot like Autism, without the anti-social component. Casey has trouble relating, interacting appropriately, communicating, learning... I could go on but that's a depressing road for a mom to go down.
It's easier to focus on what Casey CAN do: he loves people, he loves the gym, he loves making faces and yelling when lifting overhead. He knows if you forget your wrist wraps. He loves when you change into lifting shoes. He can find your book when it's hopelessly lost on the shelves. He loves high-fives- the really hard ones that sting, BAD.
FRAXA, the Fragile X research foundation, funds research. Again, we'll get all science-y another time, but they receive their dollars from lots of little events like ours, often put on by families and small businesses. They write grant proposals and lobby congress and schmooze with wealthy philanthropists and the result has been 24 million dollars in research since 1984.
Every dollar we raise goes to FRAXA.
None of it goes to Rainier CrossFit, Casey, our family, or our pockets. Any expense of putting on this contest, from competitor t-shirts to equipment is covered by RCF. We get as much donated as we can- food, tents, prizes. Our goal is fun, safe, challenging. We leave fancy, expensive, glitzy for Regionals.
Come join us. Compete or hang out and have a beer. Bring your kids. (please don't bring your dog)
We're just a family trying to raise some research dollars for an organization that could help thousands of kids. Our kid just happens to be one of them.