Local runner commits to Chicago Marathon — for a cause
- on September 20, 2011
Cornelia de Lange Syndrome affects between 1 in 10,000 and 1 in 30,000 people.
By those statistics, somewhere between three and eight people in Lawrence are currently living with the syndrome.
But just one Lawrence resident will be running in the Chicago Marathon on Oct. 9 as part of 20-member Team CdLS. Jonathan Larance, public information officer at the Kansas Department of Health and Environment and a Lawrence resident for the past eight years, will be running in his second marathon ever in support of his cousin, Emma Thompson, of The Woodlands, Texas.
"She's a gift from God and a shining star to everyone she meets," Larance said.
Emma, 13, was born with CdLS. She and Larance have always been close. He'd been looking to run another marathon — his first was several years ago — and when this opportunity came up, after the regular registration had already closed, he knew the opportunity was right.
But in order to be a part of Team CdLS, he had to commit to fundraising. His 20-member team has a goal of raising $70,000 for outreach, research and support for the battle against CdLS. His individual goal is $2,000 (and donations can be made online). With just a few weeks until the race, he's approaching the goal with just online donations and he said he's expecting a check from his brother's school, as well.
"They had a dress-down day, where everyone paid to wear casual clothes," he explained.
Larance has been training all summer for the marathon. Even in the hottest days of July and August, he was running 15 or more miles to prepare. He said he uses the song Tik Tok, by Ke$ha, to keep him going through the hottest days of summer. It'll be the song he uses to power himself to the finish line as well.
And Emma will be waiting for him there, cheering him on. His parents, brothers and other friends and family also plan to be in Chicago to cheer him on when he finishes.