My LINKS to Fragile X

So you all know Marc and I have 3 children with Fragile X Syndrome, the world's leading cause of inherited mental impairment and the leading known genetic cause of Autism.

If you didn't know we are linked to 3 children with FXS… you're new to this blog.

If you didn't know that Fragile X could be the key to finding a cure for Autism… you're just like most of the world.

The first "if" is a big deal to me and my family.

The second "if" is a HUGE deal for the rest of the world!

People ask me all the time, "Why do you lead the Fragile X Association of Utah when you already have your hands full with 3 children who are affected by the syndrome?"

The second "if" is why.

I want to make sure that every family in the world who has Autism running in their family knows to get a blood test for the Fragile X gene.

Some people ask why I am so passionate about helping those who may be misdiagnosed to get the real diagnosis…

This is why:

The Fragile X Gene causes several issues to those who carry the permutation gene that are often misdiagnosed as Parkinson's or early Menopause. Read more about these facts here.

And you approach Fragile X differently than you do Autism, trust me, I know. I watched Brother fall apart when forced to make eye contact because Autism was what many of us thought he had before his diagnosis of Fragile X. After the FX diagnosis we learned that allowing him to get to the point of feeling comfortable enough to make eye contact on his own and even looking at the floor instead of him when requesting something of him.

I know this is a bold post.

I know some people may leap out of their skin because of me trying to say that your child may indeed have an inherited syndrome and not an Autism Spectrum Disorder.

This is why I am part of the National Fragile X Foundation LINKS groups.

I want to learn more how to lead and guide our small association here in Utah to reach out to all those who may have been misdiagnosed or think there's just something more going on other than an Autism Spectrum Disorder.

The National Fragile X Foundation is giving me the keys to being a better leader and advocate so that no one has to go through the heartache, wonder, and frustration of not knowing exactly what you're dealing with.

I had the opportunity a few weekends ago to go to St. Louis to be trained as a better leader along with my co-leader (also known as "more than my sidekick"), Tiffany.

It was overwhelming, exciting, exhausting, exhilarating, and motivating for all of us. I am excited to know that I have more help standing beside me. Because I have to admit, this is NOT easy leading and raising Fragile X. I try to give up sometimes and even have, but every so often I get a reason to continue to move forward and this LINKS Leader Retreat was just the push I needed.

This is the Tiffany Sandwich. Tiffany on my left and Tiffany on my right!
Love them both and it was fun being the 3 Mormons together (smile)

Cool Cookies! That's National's Logo X on that there cookie!
I'm thinking you're going to see a lot more of that X here in Utah...

Just some of the great mom's I was able to hang out with!

This photo makes me laugh… a lot! I look like a minion. I just need some overalls…
I really need to find out if there is a class on how to take "selfies" ugh, I'm just no good at it (laugh)!

                                                                image borrowed from here

I guess this just shows how excited I was to get out of my seat for a few minutes...

I even got to meet one of the people in the blogging world of FX whose blog I love to read! Yay!
So fun to meet you in person Bonnie from the Fragile X Files blog!

And to think I was right there in St. Louis during the World Series and this is all I got was a picture with a balloon arch at the airport… tee hee!

It was a great experience and I am excited to have another push forward.

One thing I did love, other than all the camaraderie, was seeing so many mom's with their hefty duty Otter Box covers for the iPhones. I'm an anomoly in regular situations, but at a Fragile X Gathering I know I am among those who have to protect everything they have that is important with the utmost security.

The theme of our LINKS leadership meeting was a quote by Vince Lombardi, "Individual commitment to a group effort—that is what makes a team work, a company work, a civilization work."