Holly Usrey-Roos
LINKS Program Coordinator


Ten years ago, Andrea (Schnarr) Wronkiewicz approached me about hosting a Walk for Fragile X in honor of my children—Parker and Allison—as her senior high school class project. That first walk brought together 150 people and raised $5,500. Our group—the Central IL Fragile X Group, with my co-leader Amy Zeleznik—partnered with Andrea again on Saturday, April 20, to host the 10th Annual Walk for Fragile X in Canton, IL.

Back in 2004, Andrea and I had agreed we would hold the walk every year, but I don’t think either she or I actually thought so far ahead to believe we would still be doing it 10 years later!

The walk has grown not only in size, but also in activities available for participants. Early in the morning prior to the walk, our group held its 3rd Annual 5K run sponsored by Modern Health and Fitness in Canton. The run was started by Lori Driscoll, one of our parent volunteers. This year it included 74 participantswalk-organizers, among them Dr. Elizabeth Berry-Kravis from the Fragile X Clinic at RUSH University in Chicago.

The day also included raffles, silent and live auctions, carnival games that the local Girl- and Boy Scout troops run, an inflatable bounce house and slide, a bake sale, a concession stand, pictures with our mascot bear, and Fragile X merchandise for purchase.

We were a little concerned this year because the location we have used for the past nine years was completely flooded and we had to change locations at the last minute! That change from the park to Ingersoll Middle School turned out to be a new and bigger location that our group plans to use in future years.

There’s even more by way of our good fortune: Despite the worst flooding seen in over 60 years, the sun was shining for the 10th Annual Walk! This year was extra special for the group, not only because it was the 10th but because so many Fragile X families were coming in to join us. Prior to the walk I was aware that my best friend (and Fragile X mom) Melissa Welin was flying in with her son Caleb from Massachusetts, as were families from IL, IA, WI and SD.

And was I ever surprised Friday night when Amy called me outside and standing there were Mary Beth Langan from Michigan, Cindi Rogers from Colorado, and Karen Kelm and Talitha Humphrey from Canada. It was a surprise these friends had been planning for almost a year. We ended up with Fragile X families from eight states plus Canada in attendance for the walk!

As if all that weren’t enough, the fundraising effort, including the online donations and the $1,045 raised from the local Papa John’s Fragile X night, passed the $30,000 mark! We will continue to take donations through the end of May as we wrap things up.

Money raised will go to the NFXF and to the Central IL group, who will be hosting an educational seminar in September with psychologist and behavioral specialist Dr. Marcia Braden.