Eye Disease Cure May Be ‘Within Sight’

We’re all willing to go the distance to make life better for our kids, but not just any parent steps up when that distance is a 1-mile swim, a 23-mile bike ride and a 6-mile run, an Olympic triathlon.

 

But Wilmette’s Mike and Chrissy Cornell dive right in to raise money for a cause that’s close to their heart, and they’ve been doing this for, well, seven years running.

The Cornells compete in the Big Foot Triathlon in Lake Geneva, Wisc., every year, gathering together friends and family for their fundraising effort called Within Sight, which supports the Foundation for Retinal Research (FRR), an organization started by another North Shore family. To date, they’ve raised more than $250,000.

The Cornells’ daughter Sela, now 7, was diagnosed with a rare retinal disease called Leber’s congenital amaurosis (LCA) shortly after she was born in 2002. The condition, the result of gene mutation, causes blindness or severe visual impairment. For Sela’s first birthday in 2003, the Cornells decided to do a triathlon for the first time.

Paige and Mike Cornell

“We wanted to honor and celebrate her, and we wanted to help others, too,” Chrissy says.

At the time, the Cornells had just learned about the FRR, a Northbrook-based nonprofit that was founded in 1997 by Betsy and David Brint of Highland Park, who also have a child with LCA. The foundation’s mission is two-fold: to find treatments and cures for degenerative eye diseases and support families who are affected by these conditions.

“Chrissy and Mike are the next generation for this foundation, and they are breathing lots of great life into it,” Betsy Brint says. She describes how the Cornells have dozens of friends and family members who fly in from all over the country to participate in the triathlon each year and celebrate at a post-competition barbeque.

This year’s triathlon, which took place in June and raised more than $30,000 with 30 sponsored athletes, was particularly special because it was the first year that some children with LCA participated. Sela, who is legally blind, rode on a tandem bike with her mom in the biking portion of the sprint race, an abbreviated version of the Olympic triathlon. It was also the first year that the FRR was the official charity sponsor of the entire event.

And it looks as though the Cornells and other families coping with LCA are speeding toward a bright future. Recently, gene therapy has allowed scientists to restore some vision in young people with LCA in clinical trials. But there are 25 different gene mutations that cause LCA, so identifying them all is a major first step.

“I’ve started to realize that it is a true possibility,” Chrissy says of Sela having some of her sight restored in the future.

As if seven Olympic triathlons weren’t amazing enough, Mike Cornell will be competing in the Madison Iron Man on Sept. 13 and collecting sponsorship dollars that will go to the FRR for that event as well. To find out more about sponsoring Mike, visit the Within Sight Web site.

For the Cornells, Within Sight isn’t just about raising money for a cause. It’s also about setting an example for Sela and other kids.

“It’s become this very special day that celebrates her and who she is, and allows some great community-building to take place,” Chrissy says. “It shows Sela that when people get together you can really make a difference.”

  Who We Are       NFP Support       Magazine       Programs       Donate    

X