- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
“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 three hours to attend the Walk for Faces of Fragile X in Kansas. 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 those efforts is to bring internationally respected professionals to Kansas to help us educate our families, school staff members, service providers and medical professionals about the most effective approaches to meeting the challenges of Fragile X.
For example, last year’s walk funded a conference that attracted professionals from seven school districts all across Kansas, and we have heard from some families that it made a huge difference in how the school approached teaching their child.
One mother, Jeanie Calenoff, traveled all the way from Chicago to be at our walk this year. She said that the day was “brilliant” and flowed really well. She was impressed with the high-quality theme baskets and handmade items for the auction, the live entertainment, the 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 explore during the walk. There was a professional face-painter and a balloon artist who were fun for the kids and even adults. It was truly a rewarding day for everyone.
One of the most touching moments was the reading of a letter from NFXF Support Services Coordinator Jayne Dixon Weber that accompanied the two pink tutus she had made and donated for our silent auction. The most poignant part was her goal “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 about 200 people registered, plus others who attended to watch the entertainment or participate in the auction, it was a huge, vibrant Walk for the Faces of Fragile X.
Till next year!