I want to introduce you to someone named Cindi, & her family.
Even though my family has had some sort of involvement in the fragile x community since 2007 (following H's diagnosis which was late in 2006), it honestly took years to really embrace it.
For me, being blindsided by the discovery of this fragile x gene, only meant I wanted absolutely no participation beyond what we needed to do for Hayden. I was not ready to have anything in common with the very people who could actually empathize with us & support us.
But thanks to social media-- honestly, thank goodness-- where I could be in control of how much exposure I was comfortable with, & I could be in control of how much I wanted to participate (or not)... I was finally connected with about 100 different families. Not individual people, but households-- so person by person that number is much greater.
Just to offer perspective... on Facebook alone the average number of mutual friends I have with most people I graduated high school with, is around 100 or so. The average number of mutual friends I have with most people in the FX community-- almost double that.
Suddenly our unfamiliar circumstance did not feel so uncommon.
A couple of years ago a mom of two young men from Colorado (both with FX), posted something about seeking a new home for therapy equipment that their guys used when they were kids, but had long since outgrown. I'm talking about big stuff-- suspension equipment for sensory integration. (It's OK if you do not know what I mean... just pop it in any search engine.)
For at least 5 years now, we have had a platform swing for H (handmade by Pop Z), hanging in the middle of our living room. Since the hook is already anchored into the ceiling, I inquired about the equipment. Besides I knew if it didn't work well for H, for whatever reason, I could also donate it to the school because they too use suspension equipment.
Mrs. Cindi Rogers graciously, eagerly sent said equipment across the country to our home-- just a heartfelt donation that she would not accept anything in return for-- except gratitude.
This is just a mere glimpse into the kind, generous, supportive people that make up the Rogers Neighborhood. (If you wish, you can click here to learn more about the Rogers Family Story. This link will open in a separate window.)
They are also famous for their RV named Rocket, & every time they blast-off on a new family mission all of us look forward to following their travels. There is even a special Facebook group dedicated to their journeys, where we can enjoy frequent updates posted by Mrs. Rogers herself.
In the summer of 2013, cleverly using the neighborhood theme of their family name, as well as their family's beloved Rocket, the Rogers Neighborhood FX Family Fund was born!
This was a fund specifically created to assist families affected by fragile x, who otherwise would not have the resources to attend the International FX Conference. These conferences are hosted every other year by the National Fragile X Foundation, & it is the single largest gathering of parents, researchers, clinicians, educators, psychologists & other experts in any place at any time.
As far as the fragile x community is concerned, it's like the World Series & Superbowl all rolled into one event. I mean Advocacy Day is up there too, but that's more like our chance to put on our army uniforms (so-to-speak)... straighten our backs... raise our chins... show 'em just how strong we really are... & march tall on Capitol to truly have our voices heard.
All of these opportunities are out there... all year long... but making sure people can take advantage of them is a different story.
So needless-to-say the amazing, incredible Rogers Family is personally going above & beyond to help ensure that more families are able to experience this unparallelled Conference. So far, they have raised enough funds to offer 10 scholarships to 10 families! This is incredibly impressive... but need I explain how there are countless more who can benefit from this.
Once again, here is the link to donate & help!
I would personally opt for the perfectly-priced $20 famous t-shirt if I were you-- (H of course already has his own--) but non-t-shirt-wearers can donate, too! In any amount of your choice-- it's very easy! :)
Even if you personally are not in a position to donate, simply sharing the link is contributing as well...
On behalf of the entire fragile x neighborhood, thank you in advance for helping us move
For more information about fragile x syndrome & fragile x- associated disorders, please visit The National Fragile X Foundation