Posted at May 8, 2013 | By: | Categories: Central Illinois | 25 Comments

A 10-Year Roaring Success for Central IL LINKS Group’s Annual Walk!

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.



  • It was an amazing and breathe-taking site to see all those that truly supported our kids. Thanks to Holly, and all of those precious volunteers that made this event possible!

  • What an honor it was to participate in the last two “walks.” This year, even with a weather-induced last minute site change, it was a thrill to see the attendance, the joy, and the love that this year’s event, the TENTH, exhibited. Thanks so much to Holly, the Central Illinois FX team, and the wonderful FX Families for allowing me to be a small part of your wonderful success! Here’s to many, many more! Peace.

    • Thank you so much, Lenny! It is always wonderful to have you at our events! It means a lot to me, and our group & the fx community to have your support!

  • Awesome Job Holly!! =) Thanks for all that you do for the FX community! Love ya!

  • Even though I’ve seen the Now and Then photos, they speak volumes when next to each other!! What an eXciting time! So glad I got to crash the party. Great job Holly – your work in the Fragile X community (family) is truly inspirational!

    • Thank you so much!
      I enjoy looking at the pictures next to each other too! We’ve come so far! Thank you so much for coming from MI to be part of our very special event!!

  • Our son will be 41 in June. Are there any groups in the Boynton Beach Florida area? Does anyone have an older child like Richard?Would love to make a friendship

  • Thank you so much, Eric!

  • Thank you, Rene! I look forward to meeting you, in person, one day soon!!

  • LOL, I kinda thought that’s what you meant 😉 Thank you so much, Shannon!

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