Annual Energy for Life Walkathon Oct. 13
By Josh Whitener
Matthews resident Christy Koury has worked to raise awareness of mitochondrial disease since her oldest daughter, Bewlay, was diagnosed in 2006. And thousands throughout the region will join Koury in the fight Oct. 13 through the third annual Energy for Life Walkathon.
The event takes place at Charlotte’s Freedom Park. Money raised at the walkathon will benefit the United Mitochondrial Disease Foundation, which supports the search for better treatment and a cure for the disease, funds public education and provides financial assistance to individuals and families affected by the disease.
The walk consists of a 5K course as well as two shorter paths for those who can’t walk the longer stretch. Educational information about the disease will be available and storyboards featuring the testimonies of regional patients will be displayed along the path. Medical specialists will be on hand to answer questions and local band Phase 2 will provide live entertainment.
Registration begins at 8:30 a.m. and the walk starts at 10 a.m.
Koury worked to bring an Energy for Life Walkathon to the area in 2010 and has worked to keep the walk going strong. Koury was first personally affected by mitochondrial disease when Bewlay, then 4 years old, was diagnosed with the disease in 2006.
Mitochondria are organelles present in every cell in the body, except red blood cells. The mitochondria work to produce 90 percent of the body’s energy. Mitochondrial disease occurs when these components fail to work correctly. Because of the widespread presence of mitochondria in the body, the condition can manifest itself in many different ways, such as gastrointestinal issues, pulmonary deficiencies, heart problems, issues with the eyes and ears and – as in Bewlay’s case – autism.
At the time of Bewlay’s diagnosis, it was believed that most children diagnosed with mitochondrial disease before the age of 5 would not live past age 20, although recent research has discovered more than 50 percent of those diagnosed with the disease will live normal life spans. Koury’s desire to see that number increase and see her daughter live a happy, healthy life drove her to get involved with the UMDF and, ultimately, organize the walk.
For the walk’s first year, Koury’s goals were to have three sponsors and raise $33,540. Although only one sponsor participated, the event raised more than $74,839, and 657 registrants participated in the walk. Last year, the goals were to have 985 registrants and raise $105,250. The 2011 walk exceeded both goals, with 1,154 registrants participating and $159,126 raised.
For this year, Koury hopes the event will raise at least $166,100 and recruit at least 1,065 people.
Koury said she’s hoping the success from the previous two years is an indication that this year’s walk will be bigger and better than ever before – despite the recession.
“It’s a really lofty goal, but we’ve exceeded our goals (for) the past two years, so I’m confident we can do that again this year,” she said.
To promote the walk, a Facebook page has been set up, and the walk’s organizers were able to secure an electronic billboard along Interstate 85 to advertise the event. Koury’s also reaching out to local physicians’ offices, particularly pediatricians, to get the word out, although she’s hoping some adult clinics will participate as well.
“There are so many affected adults, and adult care can be more difficult because adult physicians aren’t looking for it,” she said.
The 2012 walk has already received support from five corporate sponsors – Austin Canvas & Awning, Charlotte Pipe & Foundry, Domtar, Lalilab, Inc. and Signature Consultants. Community members also have jumped on board, including students and faculty of McKee Road Elementary School, where Bewlay attends. The school has organized a loose change drive, and the class that raises the most money will participate in a kickball game with the school’s administrators during school hours.
“Kids bring in their allowance. They love Bewlay,” Koury said. “The school has been fabulous. They really embrace her.”
Koury is excited to help bring the walk back to Charlotte and hopes this year’s walk will not only reach its goals, but also make the public aware of mitochondrial disease and get community members involved in the fight.
“For me, the biggest thing is to raise awareness of how common (mitochondrial disease) is, and the types of diseases it’s linked to,” she said. “Just bringing the walk here at all, to have that help from others, that’s the thing that I can offer, and it’s great.”