“My wife Beckie and I were honored to participate in the Walk for Fragile X in Canton again this year. Holly and Scott Roos have opened my eyes to this relatively unknown syndrome by sharing the experiences of their own children, Parker and Allison. I am fighting in Washington to increase federal funding for Fragile X research and development," Hare said.

"I also plan to form a Congressional Fragile X Caucus, so we can raise awareness on a national level. We must continue to develop more effective treatments for Fragile X and eventually find a cure. I look forward to working with Holly, Scott, and other Fragile X families in this effort,” Hare added.

More than 350 people participated in this year’s walk for Fragile X, raising almost $23,000. The walk included one corporate sponsor, 12 Fragile X Family Sponsors, six Fragile X Individual Sponsors, 28 Fragile X Fact Sponsors and 172 Friends of Fragile X -- a grand total of 219 sponsors of this year’s walk.

The group is just shy of its $25,000 goal will continue to take donations through the end of May. Anyone wishing to make a donation can send it to “Walk for FX, c/o Scott and Holly Roos, 914 N. Sixth Ave., Canton, IL 61520 or email Holly at centralilfx@yahoo.com for more information.

Part of the money raised from this year's walk will go to provide scholarships for area families, school personnel, therapists, physicians, and agencies who work with individuals with Fragile X to attend the 11th International Conference in St. Louis this July. The conference is held every other year and brings together the top professionals in the Fragile X fields. The remaining funds will go to the National Fragile X Foundation and FRAXA Research Foundation for education, awareness and to fund research for Fragile X."

Special guests at the walk included Cong. Hare, author Maureen Lang, and Dr. Elizabeth Berry-Kravis.

Fifteen Fragile X families attended the walk as well, coming from Chicago, Malta, DeKalb, Pekin, LeRoy, Washington, Cambridge, and Canton. Rick Perry, from Minnesota, also flew in for the walk.

“Rick has supported our walk every year, ordering T-shirts and sweatshirts through the Fragile X Listserv we belong to," Roos said. "We were surprised and excited when he told us he would be flying in for the walk. It was the first time we had met in person.

"Rick has four children, including a son and daughter -- Jack and Carly -- who have Fragile X. One of the great things about the walk is it gives the families a chance to talk and to see other children like theirs. We need to see we are not alone, to listen to each other talk about our children and really be able to understand what that family is going through.

"The families that come from all over for the walk are always impressed with the support from our community. I think the best comments we get are from the families affected by Fragile X. They are amazed that those who participate aren’t just there to walk or participate in the auctions -- they are there because they care for our families. They’ve taken the time to learn about Fragile X and really want to be a part of making a difference and a better future for those living with Fragile X. That says a lot about the community we live in.”

Sharla Davis of Washington attended the walk with her family, including her 15-year-old son, Hayden, who has Fragile X.

“We come to the walk because it’s a great activity for the entire family. This year we brought along friends of both of our sons, friends who may not have seen others with Fragile X outside of our family," Davis said. "It was a great opportunity for them to see that Fragile X is in every community and how differently we are all affected. I thought the walk was great, a very supportive activity, educational and most of all -- fun. It was awesome, it really was great! We really enjoy this event.”

Dr. Berry-Kravis from Rush Medical Center in Chicago spoke to the group about advances in research and the importance of events like this that support research projects like those that have cured Fragile X in mice.

Author Lang of Chicago was selling copies of her novels, “The Oak Leaves” and “On Sparrow Hill”. Lang, a mother of a child with Fragile X, donated 100 percent of the book sales back to the day’s event.

Also addressing the group was Andrea Schnarr who organized the first walk five years ago and continues to be involved in the walk each year.

Before the beginning lap of the walk, committee member and volunteer Tiffany Williams presented Holly with a quilt being pieced together with T-shirts from the past five years of the walk, along with a bag of special items on behalf of the Walk for Fragile X Committee members.

“The committee decided to do this for Holly because she puts 110 percent into organizing the walk and various other fundraising events for Fragile X without getting anything in return. She dedicates a lot of time to awareness and speaking to groups about Fragile X, and this is our way of showing Holly how much we appreciate what she does and giving her something back. This was our way of showing Holly and her family how much we love and appreciate them,” said Williams.

The first lap of the walk, which is a tribute to all living with Fragile X, was led by the Roos family, Schnarr, Cong. Hare and his wife Beckie, and Dr. Berry-Kravis. Following them were families affected by Fragile X and then all of the supporters.

“The first lap is always such an amazing sight -- seeing all of the people here to support Fragile X is incredible,” said Roos. “It makes all of the time we put into the walk worth every minute; you can feel the love and support that everyone has for families like ours.”

Emie Schaeffer of St. David, owner of “Em’s Beaded Treasure,” designed two special bracelets for Fragile X and had them on hand at the walk for sale.

“The bracelets are beautiful and have become our official local bracelet for Fragile X” said Roos. “Emie put a lot of work and time into the design of our bracelets, and they are truly beautiful.”

Elaine’s Jumbled Jewels of the Red Hat Society provided an early-morning bake sale for participants. Walk volunteers sold BBQ pork sandwiches donated by the Cattle Drive Meat Company along with chips, soda donated by Coca Cola and cookies donated by Subway and Grandma Day for lunch.

With over 70 items for raffle, 60 on silent auction and 60 on the live auction, many won raffles and their auction bids. On raffles, Jeannie Calhoun of Canton won the $100 BP Gas Card; Karen Hanlin of Fairview won the quilt donated by Elaine’s Jumbled Jewels; Connie Clark of Bath, the quilt donated by Ma’s Gott’a Notion; Ericka Fannon of Macomb, the WIU/Papa John’s bowling package; Mary Bohm of Chicago, the Jack Nicklaus-autographed Hat; John Eveland of Canton, the Bruce Weber-autographed basketball; and John Usrey of Cambridge won the Boomer Grigsby-autographed football.

Eric Barnard of Canton was the winner of the 50/50 drawing, donating his $200 half back to the event.

Chris Duvendek of Canton made a return appearance to paint faces for the children at the event. "Everyone loved the face painting last year, it was something both the adults and children were looking forward to this year; we were really excited to have Chris join us again," Roos said.

Auctioneer Jake Fiddler provided auctioning services for this year's walk. Bill Yocum, of Lewistown, provided the sound system for the auction.

WBYS was on hand doing a live remote. "We love having the WBYS staff on hand!" Roos said. "They are so much fun and it gives us an opportunity to reach many more people. Dr. Berry-Kravis, Cong. Hare, along with many others were interviewed during the live broadcast."

Canton Daily Ledger photographer Bill Burnham once again provided the walk group picture, along with many pictures of the day's events. "Having Bill on hand is such a blessing!" Roos said. "He seems to know exactly what we'd love to see captured in pictures and does an amazing job of getting everyone together or capturing them at the right time."

Thank-you items in participants' walk bags this year included snacks from Little Debbie, Water from Hinckely Springs, and Lightning Bugs candy from Kandy Kastle. The bags also contained a program for the day’s events, information from the National Fragile X Foundation, the FRAXA Research Foundation and flyers on upcoming events including “Funny Faces for Fragile X” at Joshua Photography and the “Guns and Hoses” basketball tournament on May 3.

“This event really would not be possible without our committee members and volunteers," Roos said. "Scott Roos, Karen Hanlin, Tiffany Williams, Kristy and Paul Englert, Kim Lyons and Amy Pollitt were really key committee members in making this event so successful. I’m so thankful to them and all of the volunteers that made this event possible, there is no way I could do this without them.”

“We’re glad that we can support Fragile X because it’s very worthwhile, and we hope that we can find a cure soon. We’ve really become attached to and love Parker and Allison very much,” said Tiffany Williams about her involvement in the walk.

Ayana “Ms. Yani” Burke of Peoria, advisor of “K-Kids” which is a branch of the suburban Kiwanis of Peoria, brought some members of her group to this year’s event. The K-Kids group is the only primary group in downstate Illinois, consisting of children in third, fourth, and fifth grades in Peoria.

“They are leaders in their classrooms and very involved in community service events. They each raised money for their Walk for Fragile X T-shirts and were really excited to participate in this event. We had a blast; not only was it fun, but it was an educational experience for them as well. The information they learned here they will take back with them to our community,” Burke said.

“We’re already working on ideas for next year,”said Roos. “We hope to keep the event growing and making it better each year! It’s hard to put into words how much we appreciate the support that we get for the walk. We are just so thankful, very thankful to everyone.”