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3rd Annual Walk For the Faces of Fragile X

October 12, 2013

3rd Annual Walk For the Faces of Fragile X19 Group sign with balloons

Organized and Hosted by 

Kansas Fragile X LINKS Group

  “The walk just keeps getting bigger and better every year!” This was a comment made by the Mom in one of our families who drives more than 3 hours to attend the walk. She was particularly excited this year because her brother and his family joined them at the walk. That’s what it’s all about — families and their communities coming together to raise awareness, foster acceptance, and see that we are not alone on this sometimes daunting journey. The walk helps us grow stronger together, and it helps us raise the funds needed to support our efforts throughout the year – one of which is to bring internationally respected professionals to Kansas to help us educate our families, their school staff, service providers and medical professionals about the most effective and latest approaches to helping with the challenges of Fragile X. For example, last year’s walk funded a conference that had seven school districts from all across Kansas in attendance, and we have heard from some families that it made a huge difference in how the school approached teaching their child.

21 Fragile X momsWe had a Mom travel all the way from Chicago to be at our walk this year. Jeanie Calenoff’s take on the day she spent with us was “Brilliant!” She said that the day flowed really well, she was impressed with the high quality theme baskets and handmade items for the auction, live entertainment, incredibly tasty home baked goods for sale, free lunch, beautiful park setting, game area, playground for the kids, and the scavenger hunt for the kids to do during the walk. There was a professional face painter and a balloon artist, and both were utilized and fun for the kids AND some adults. It was clearly a fun day for everyone.

16 another tutu picOne of the most touching moments was the reading of a letter from Jayne Dixon Weber that 9 pink tutus Mom and Jenaccompanied the two pink tutus she made and donated for our silent auction. The most poignant quote was that her goal “is to encourage families to not just live with Fragile X, but to embrace it. Our children teach us more about life and how to live it than anyone or anything could ever do.”

We started with four families three years ago, and this year we had 14 family teams raising funds and participating in the walk – some with young children and some having adult children with Fragile X Syndrome. With around 200 people registered, plus others who attended to watch the entertainment or participate in the auction, it was a huge and vibrant Walk for the Faces of Fragile X.

Thank you to everyone who came out and supported our families!  Also, a big thank you to our sponsors and volunteers, and those who donated to the auction and the bake sale.  This truly is a team effort, and we appreciate all of you!  See you next year!

Balloon Artist

Balloon Artist

6 Youngest Murphy with balloon hat3 Balloon ArtistJay in balloon hat

Face Painter

Face Painter

14 Anthony and Suzi12 more face painting7 kids with faces painted

Silent Auction

Tutus in auction Silent Auction

Bake Sale

Bake Sale

Kansas State University Tap Dance Ensemble

Kansas State University Tap Dance Ensemble

15 Ryan tapping4 Tappers tapping with CharlieTappers

Walkers Volunteer (Logan's girlfriend) Two young men T-Shirt sale table Terri Fox Fitness sponsor sign Team Tyson and Charlie (Tyson playing baseball) Team Tyson and Charlie (Charlie with Willy) Team Joshman sign Team Chaliver sign Smile Therapy folks Signs shelter with people Rhen and Rhett's Runners (football) sign Ryan behind tree Scavenger Hunt sheet Preregistration Rally for Ryan Sign Rhein & Rhett's Runners (cheerleaders) Peters Parners sign Murphy25 Murphy24 Murphy23 Murphy21 Murphy14 Murphy11 Murphy13 Murphy8 Murphy5 Murphy1 Mike, Mary and Lisa KU and KSU contest table KSU closeup Kids games Jen and Josh Jen and Kelliana Info table Hanna's Heros sign Hanna's Auto Repair Hanna family sign with carrier passing FXS genetic cause of Autism sign fragile x info sign Food prep Eric & David Team Toews sign Brooke and Kristen Anthony's Advocates sign Auction set up Balloon experts! Adam's Army sign Anthony and his scooter Angie and Jen posting Tap Ensemble 17 Murphy's Mentors sign Toews3 Toews2 Toews1 DSC04365

This link should take you to our bigger photo album from the walk which was uploaded to facebook.  You do not have to use facebook to see the pictures:

https://www.facebook.com/media/set/?set=a.595379827171933.1073741829.176750102368243&type=1&l=7bb262895b

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