The Fourth Annual Del’s Ride is Aug. 27 at Sleepy Hollow Inn Ski & Bike Center in Huntington. This fundraiser supports research into a cure for Alternating Hemiplegia of Childhood, a rare and painful neurological disorder.
This mountain bike event has grown significantly over the past few years. The inaugural ride at Sleepy Hollow in 2014 raised more than $7,000; the second raised over $15,000 and 2016 brought in $21,000. Excited by the recent identification of another gene related to AHC, this year’s fundraising goal has been set at $30,000, said organizer Katrina Sliwka.
New this year is a shuttle-supported 10-mile biking loop and more kids’ activities. In addition to the new loop and mountain bike trail ranging from 7 to 20 miles, other options include challenging 5-6 mile trail runs. A barbecue and live band cap off the fun after the races. Registration is now open at delsride.org.
Del’s Ride was conceived by friends and family of Delaney Johnson, an 8-year-old living in Essex Junction, who was diagnosed with AHC when she was 10 months old and epilepsy at age 4. There is no cure or 100 percent effective treatment for AHC with only 700 confirmed cases worldwide. All proceeds from the ride go to Cure AHC a non-profit organization dedicated to finding a cure for AHC.
Event co-founders Ben Johnson and Katrina Sliwka are Delaney’s parents. “The community continues to be incredibly supportive of this event, and we’re optimistic that we’ll reach our fundraising goal,” Sliwka said. “Delaney loves to ride bikes and explore the outdoors, so this event really reflects her spirit and enthusiasm. The challenging terrain for Del’s Ride takes some determination, but it’s also beautiful and a lot of fun, just like Delaney.”
Children with AHC can experience a range of paralysis, from simple numbness in an extremity to full loss of feeling and movement. Two months before her first birthday, Delaney was diagnosed with AHC. The family worked with neurologists at Duke University, Montreal Neurological Institute and Hospital, University of Utah and UVM Medical Center. While there is no cure for AHC, the ATP1A3 gene was identified in 2012 as a leading cause of AHC and represents approximately 76 percent of those affected, including Delaney.
Delaney, who wears braces on both of her legs, is entering second grade. The family is active and spends their weekends skiing, swimming, biking and being outdoors. Delaney has spent the last three winter seasons skiing at Smugglers’ Notch last winter through the resort’s adaptive ski program. Earlier this summer, Delaney had the joy of spending a fun-filled week in Colorado, exploring the outdoors as part of her wish from the Make-A-Wish foundation.
The rain date for Del’s Ride is Sept 17. Sleepy Hollow Inn Ski & Bike Center and Cure AHC are sponsoring the event.