On Sept. 18, the sixth annual 2011 Chicago Walk for AHC will be held at Paulus Park from 10 a.m. until 1 p.m.
The walk is a fundraising and awareness-raising event organized largely by parents, relatives and friends of children who are afflicted with AHC, or alternating hemiplegia of childhood, a neurological disorder that’s so rare, there are only three or four children in the surrounding area who are known to have it. The event was started in 2006 by the godparents of Emma Platt, who is now 9 years old and has AHC.
Ten-year-old Kiley Andrasco, , also has AHC, and her parents are instrumental in the success of the annual walk. Kiley’s mother, Kelly, is on the organizing committee for the annual walkathon.
This is the fifth year that both Kelly and Kiley have helped coordinate the walk at Paulus Park, along with the Platt and Evans families, who each have children with AHC. The Platts and Evans families are from the Arlington Heights area. The walkathon and other events are the main source of funding for research to find the causes of AHC and effective treatments or cures.
“The funds raised at the walk will benefit the Alternating Hemiplegia Foundation,” said Kiley’s father, Gene. “The mission of AHCF is to find the causes of AHC and effective treatments or cures while providing support to the families and children with AHC. The foundation is funded entirely by family fundraising efforts and activities, like this walk.”
"We raise between $30,000 and $35,000 each walkathon. And we've also raised a lot of awareness for AHC through the walkathons,” said Kelly. “Area businesses have been very generous in providing raffle and silent auction items."
The walkathon in Lake Zurich is one of four across the country that is coordinated by families of children with AHC. The other locations include Raleigh, N.C. (Sept. 10), East Lansing, Mich. (Sept. 23) and Neola, Iowa (Oct.1).
Kelly and her husband, Gene, are very involved with AHCF, an international organization run by parents of children who have the disorder. AHCF helps to raise awareness about AHC, as well as funds for ongoing research, and Gene recently was appointed the co-treasurer of the organization.
Gene Andrasco’s background in finance should serve him in good stead as the new co-treasurer of the AHCF board. As with any nonprofit organization that is trying to raise as many funds as possible for the research of a rare disorder, the AHCF is dedicated to an assortment of efforts to make that happen.
The Andrascos are also extremely grateful for the generous support shown by both residents and businesses in Lake Zurich.
“The Lake Zurich community has been so very generous in providing monetary donations and raffle and silent auction items for our event,” said Kelly. “I’m amazed at how many businesses are so willing to help. We have some great items, including a gym membership, massages, restaurant certificates and an American Girl doll, so please come on out for an hour and join the fun.”
“I look forward to the walk because it’s a fun way to raise money,” said Ryan. “You get to hang out with friends and family while raising money for the foundation.”
“I like the walk because my family comes and I get to play with Emma (a girl from Mount Prospect with AHC),” said Kiley. “I like to walk the path at Paulus Park, and I like seeing Scoopie (the mascot) from Culver’s. Everyone comes to spend money to help with my episodes. It makes me feel good because they come to help me.”
In addition to the one- to two-mile walk around Lake Zurich, there will be a number of family-oriented activities, including an appearance by Skates, the mascot for the Chicago Wolves hockey team; free frozen custard from of Lake Zurich; a 50/50 raffle with additional tricked-out raffle baskets; wooden playground equipment; assorted sports and carnival games; and face painting.
Those who are interested in attending the walkathon but are unable to start at 10 a.m., are welcome to join anytime before the event’s conclusion at 1 p.m.
For more information about the walk, to register or to make a donation please go to http://ahckids.org/walk-with-us/chicago-2011/.
For additional information about AHC, visit ahckids.org.
Read all about Kiley Andrasco: Local Girl Battling Rare Disorder