New Event To Aid Cystic Fibrosis
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By Michael Boyd Jr.
STE. GENEVIEVE HERALD
Keys on and kick stands up, get ready for the inaugural Cruisin’ for a Cure this Saturday, Oct. 7.
A jeep and motorcycle ride for cystic fibrosis takes off from the Inn Ste. Gemme Beuvais parking lot behind Sylvanus in downtown Ste. Genevieve. A free concert by The Outsiders will be offered as well.
Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas and other organs.
There are close to 40,000 children and adults living with CF in the United States, plus an estimated 105,000 people have been diagnosed across 94 countries.
CF can affect people of every racial and ethnic group, even someone here.
The fundraiser, sponsored by Pettus Ford, will be the first of its kind locally for the Leighton’s Legion Foundation, which has been raising money for CF for over a decade.
“For my daughter,” said event co-coordinator Sarah Volner, whose daughter Leighton was diagnosed with CF. “This is our 12th year of fundraising, but this is our first ride like this. We’ve done many different things from MMA fights to car shows to chili cook-offs, to all of that. Every year we do something and the last time, I guess, two years we’ve just had a lot of smaller events, but this year we thought we would try something a little larger again for her.”
So far, Volner is pleased and a little nervous about trying something like this, but is eager to see how it all turns out.
“The response so far has been good,” Volner said. “It’s our first time doing this, so we weren’t really sure how many people we could handle all at once. We’re used to a slew of volunteers, and with this event, there’s only been three of us sort of heading it. Normally, I have 60 (people) when it comes to planning a year-out event, and we kind of did this within a few months, threw it together, but the response has been good so far.
Leighton is a Ste. Genevieve Middle School student and just traveling up any of the campus steps is a seriously difficult daily challenge.
Making things even more difficult is that CF is not a government-funded foundation, so any research has been funded mostly by volunteers across the board.
Children born 30 years ago with this disease barely lived to attend grade school and now kids today have a chance to live into adulthood.
The median life expectancy now is around the age of 40, according to Volner, and that’s 50% basically of CF patients given that chance to live beyond their childhoods.
“We’re hoping to have at least 100 to 150 people, but as far as vehicles go, we’re not quite sure yet,” Volner said.
Donations for a jeep to be in the ride will be $25 per jeep and $10 per rider; and motorcycles are $20 per bike and $10 per rider.
“All the proceeds for the event will go directly to the Cystic Fibrosis Foundation,” Volner said. “Leighton’s Legion is a long-term team with the foundation. We’ve raised, oh my goodness, if I was really totally aware, we’ve raised nearly $100,000 probably over the years for the foundation.”
Volner’s co-coordinator for the Cruisin for a Cure event is Steve Saunders.
Registration will be held at 9 a.m., followed by the route at 10 a.m. in which a map will be given out only at registration.
“The route will be a 100-mile radius that will route between here, St. Francois County, and over into Illinois, and then back to Ste. Genevieve,” Volner said. “We haven’t disclosed that route, but Pettus kind of advised us that we give the map out that day. My sister works for the Farmington branch.”
American Family Insurance agent Crystal Kramer is another sponsor, along with local sponsors the Orris and Harold’s Famous Bee Company.