EATON — More than 130 people gathered at the Preble County Courthouse on the cold morning of May 21, for the annual Great Strides 5K Run/Walk benefiting the Cystic Fibrosis Foundation, wildly outceeding the $11,000 fundraising goal and raising over $17,000.
This was a bittersweet achievement as longtime CF Foundation Preble County event coordinator and chairperson Karen Marshall prepared to step down from her position after 22 years. Marshall originated the Great Strides walk in the region, and over $300,000 has been raised since its inception.
“This has been such a special time in my life,” said Marshal. “It’s a nice to go out on a high note.”
For Marshall, it’s always been personal.
Pointing to her t-shirt reading “TEAM ALEC” — Marshall’s winning team, raising the most dollars of any participating group — she said, “My son was born in 1993. He spent his first three weeks in the hospital and had his first surgery at a day and a half old. He was diagnosed with CF, and at two weeks, they told me his life expectancy was 21 years.”
Cystic fibrosis is characterized by sticky mucus buildup in the lungs, which leads to frequent infections and gradual decline in lung function, usually leading to death from respiratory failure when people are in their 20s, 30s, or 40s. About 30,000 people have the disease.
Seeking solutions and refusing to be deterred, the new mother contacted the CF Foundation. “I’m a hairstylist,” she said — Marshall owns Reflections Salon in Eaton — “and I thought I’d offer to do a cut-a-thon. By the time I hung up from the call with them, they’d talked me into starting a CF walk.”
With less than two months to plan, Marshall put her son into a stroller and walked all over town, soliciting sponsorships from local businesses and clients.
“That first year, it was madness,” she recalled. “It poured down raining all day, the envelopes were falling apart…just madness. I practically gave myself an ulcer every year because I would think, ‘What if I fail?’ But you raise five dollars, then you haven’t failed. It took me a lot of years to get to the point of seeing that, but here I am, 22 years later.”
Preble Shawnee director of special education Jennifer Taulbee, whose niece Cherrybomb was diagnosed with CF at a young age, will take over Marshall’s mantle, and was introduced during the celebration held after the walk. Taulbee is a familiar face within the regional cystic fibrosis community, with years of fundraising and volunteer experience under her belt.
“I have to thank Karen for all the hard work she’s done over the years,” Taulbee said, “and Preble Shawnee as well, because they’re really lent so much support that’s made a lot of things possible for us here in the community. We have to keep carrying the torch forward.”
“I have such mixed emotions about stepping away,” Marshall said of the legacy she’s built, “but it’s important to know that I’m only stepping away from the chairing of this event. I will continue to fundraise. Advocacy is what’s burning in my soul right now. I’ve spoken on Capitol Hill. I want to educate the policy makers on CF. We don’t get government funding right now but we need to get the FDA and the National Institute of Health on our side to help get all our research approved, so my passion and effort will be primarily focused there.
“For the first time in the history of this illness,” she explained, “it is not considered a childhood disease. People are living longer and healthier lives with it, and that’s key. Fifty percent of the CF population is now over the age of 18. Alec graduated from Wright State University last year and lives in Dayton and enjoys his life; he’s beaten the odds, and people all over the world are doing it every day.”
Last July, the Food and Drug Adminstration approved Orkambi, a drug which counteracts the genetic defect that causes cystic fibrosis, as opposed to merely treating symptoms.
“That drug is a game changer for 50 percent of the CF population,” Marshall said, “and Alec is one of the people who are being helped by that drug. They say we’re within ten years of a cure, but I think it’s going to happen in five. We really are that close.”
Marshall may be stepping down from organizing events, but she still has one more left in her. “My ultimate goal is to be able to throw the biggest party because we finally found a cure to this disease.”
Reach Duante Beddingfield at 937-683-4061 or on Twitter @duanteb_RH.