By MOLLY DAVIDSON / Staff Writer

CULLMAN—There were no clouds to stop skydivers in the third annual Skydive 4 CDKL5: Courage for Carly event at Skydive Alabama on Oct. 11. Fifteen skydivers, including Hoover City Councilman John Lyda, Birmingham City Councilwoman Kim Rafferty and State Rep. Allen Farley, took a 14,000-foot jump to raise awareness for CDKL5.

Organized by Inverness resident Dustin Chandler, Skydive 4 CDKL5 raises money for CDKL5 research and awareness about the rare neurological condition. Chandler’s daughter, Carly, suffers from CDKL5. The condition often causes seizures and impairs neurological development. There is currently no cure for CDKL5.

“Once a year, we get together to literally show courage for the families and children with CDKL5,” Chandler said. “(The jump) is just a short amount of time… every day people with rare disorders in general have to deal with it.”

This year’s event raised around $10,000 for CDKL5 research, and since its inception, Chandler estimated Skydive for CDKL5 has raised between $70,000 and $80,000.

“It’s been touching,” Chandler said of the support the event has received from the community.

This year’s Skydive 4 CDKL5 was originally scheduled for Sept. 26, but the jump was postponed due to heavy cloud cover. Even so, Chandler said hundreds of people made the trip to Skydive Alabama in Cullman to enjoy live music from Kover Down, food from Bob Sykes BBQ and to show support and raise awareness for those fighting CDKL5.

“It helps out in fundraising… (but) the awareness it brings is big,” Chandler said. “There are 6,500 rare disorders in the world, these people are fighting every day.”

Skydive 4 CDKL5 has helped bring both local and national attention to CDKL5, and has helped to diagnose the disorder, Chandler said.

“We’ve talked about moving it to a multi-state jump… that just helps us bring awareness across the United States,” Chandler said. “Families have reached out to tell me this is an inspiration. You need to be inspired to inspire.”