Tuesday, May 5, 2015

Let 'em Know 5K


Our UTAH Community Support Network group is getting ready for the NFXF Let ‘Em Know virtual 5K.  Awareness month is just around the corner and we need to get ready.  Whether you are an experienced fundraiser or a novice, this is the easiest fundraising you will ever do.  You set up a page and then send the link to your family and friends asking they support you in your fundraising efforts.   There is the opportunity to personalize your page with a family photo and share your Fragile X story.  The funds raised through NFXF’s Let ‘Em Know 5k Virtual Event supports the mission of the Foundation and therefore directly benefits all individuals and families living with Fragile X both locally within our group and nationally.

Attached are instructions for setting up your own fundraising page under our Utah Community Support Network Team page.  We have set a goal of $10,000 as a group.  Please send the link to your fundraising page to your personal network or family and friends, whether they know about Fragile X or not. This is your opportunity to not only help raise funds but also to create Fragile X awareness on a larger scale to those who may never come into contact with it.  

We will be sending out Awareness Facts and other Fragile X messaging throughout July and will be sure to forward it along so you can share this information with your family and friends.

Directions: Follow the link below to our page and then hit JOIN this event.  You will then have 2 options: START  your fundraising page or REGISTER for this event.  In order to get a LEK15 t-shirt and race bib you must hit REGISTER. From this page you will be able to both order your t-shirt and set up your fundraising page.  If you do not wish to register for a t-shirt you can hit JOIN and that will take you directly to the page where you will set up your personal fundraising page.  The instructions attached will also give detailed step by step instructions should you need more information.

Thank you for helping make a difference!

My Baby who has Fragile X enjoying the scope at the nearby park

Thursday, April 16, 2015

We're Gonna Be in a Parade!


Do you love parades?

                                                                                           Picture used from the Miss Orem and Teen blog site

Do you love advocating?

Do you have someone in your life affected by Fragile X Syndrome?

The FXAU is going to have a float in the Orem City's Summer Fest Parade on Saturday June 13th 2015!

We are so excited to bringing awareness in a fun way and to be advertising for our 4th Annual FXAU Parade of Pumpkins in October this year! (Which, by the way, will be held at the Scout Office Building in Orem just off the 800 North Freeway Entrance/Exit)

Leave a comment or send and email if you are interested in helping in the parade.

Monday, September 2, 2013

Coming Back to Life!

This is the "cheese" smile!

Yes, I am trying my best to revitalize our sweet FXAU! I take breaks every so often, I guess, but I will be better at trying to get this updated more often.

We have an opportunity on September 6th to hear from author LeeAnn Taylor.

LeeAnn Taylor http://www.amazon.com/.../dp/1939447151/ref=sr_1_1...

The Fragile Face of God: A True Story About Light, Darkness, and the Hope Beyond the Veil

Can our darkest hour give rise to miracles? Can departed loved ones intervene on our behalf? And can the most fragile among us light the way? In this heart-rending true account, LeeAnn Taylor opens with an urgent prayer for death. With unrelenting honesty, she describes her harrowing battles raising three children with Fragile X syndrome and autism, the frightening episodes with her disabled sons, and the anguish of mothering these fragile children. When her ordeal escalates, she turns to death as her only escape.

"I (LeeAnn Taylor) will be in Salt Lake area and would like to put together a book club discussion for my new book (above), or a small gathering where I can share my story. I will bring free copies! I am looking for opportunities to share my story and my book. I would love to connect our sweet families/mommies/daddies in the FX communities across US."


Don't forget the Parade of Pumpkins is coming up this October and I'm excited to have our second annual Caregivers Dinner.

Details to follow soon on these activities.

And I hope the picture above made you smile! I know it does it for me!

Friday, May 25, 2012

We can always change our mind...

So, it has been decided that our benefit will no longer be the motorcycle ride that has been long anticipated. It just wasn't panning out, and frankly, it wasn't something I had a true interest in so we are looking at October for our Parade of Pumpkins.

You can donate to our cause at FirstGiving 


you can like us and check our Facebook Page

It's going to be a fun-filled weekend of pumpkins, face painting and prizes.

Think of it kind of like the Festival of Trees only done with Pumpkins at Halloween time...

Friday the 19th from 6 - 9pm

Saturday the 20th from 10am - 9pm
at Noah's in Lindon

Thursday, September 8, 2011

July 2011 Family Gathering

We had a great time in Orem at the Community Park. There was a playground close by for the kids and the large shaded pavilion helped ease the heat.

We had pizza, watermelon, drinks along with good conversation and great parenting ideas.

One of the great ideas shared was for those FXers who don't like just water because it doesn't have enough pizazz, just add MiO. I found it at my local Smith's store for a couple of dollars. It lasts a long time and gives a punch of flavor.

Another great idea was about brushing. One mom found that a cat brush that your find at the pet store works great and is inexpensive. If you don't know what brushing is check here.

We also had brand new members join us at the picnic. 
It was so great to meet some new people! Woo hoo!

It was so wonderful to have a gathering of parents, children affected by FXS and children not affected by FXS, and carriers of FXS. I am excited for our next event.

Maybe a fundraiser?


Thursday, March 24, 2011

Advocacy Day 2011

The FXAU was represented well in Washington this year with 4 people from our group. We sent two mothers, one father and one grandfather.

Here are a few pictures of their experience.

We hope to get more of you involved next year. It is an awesome experience and very rewarding!

If you are interested please leave a comment or send me and email.

Article in the Local Newspaper

Check out this family from Utah County!