Muscular dystrophy foundation receives $500, needs to raise more
Published 9:37 am Wednesday, August 18, 2021
The LaGrange Lions Club recently donated $500 to a muscular dystrophy foundation, The Foundation for Casey’s Cure.
“It’s not typically a philanthropy that the Lions Club international guidelines support,”
Said Brandon Adams, Vice President of the LaGrange Lions Club. “We usually do vision and hearing.”
Adams said LaGrange resident Casey Duffield has a terminal case of a rare form of muscular dystrophy.
“She’s just kind of living out the rest of her days,” he said. “Her mother started a foundation called Casey’s Cure. And basically, it’s kind of like Susan G. Komen Breast Cancer Awareness — just raising awareness and funds to support the medical research that will hopefully one day find a cure for the specific type MD she has.”
Adams said that Casey and her mother, Chris Duane, came and spoke to the LaGrange Lions Club a couple of months ago.
“We were just so moved by the presentation that we decided to step outside of our normal philanthropy that we support,” Adams said. “And the board met and decided that that was something we needed to participate in because it was someone that was here locally that was doing everything in their power to find funds to support research.”
Duane said that her daughter was diagnosed with her ultra-rare form of muscular dystrophy, which she inherited from her father, five years ago. She said that the last five to seven years of Duffield’s father’s life were very painful and that Duffield took care of him.
“Her father ended up not being able to walk, he sat with his legs crossed, he’d lie in his bed with his legs crossed because he could no longer put his legs out, [and] he couldn’t hold anything because every muscle in [his] body [was] dying,” she said. “I don’t want this for my daughter. I don’t want her to spend the last five to seven years of her life in excruciating pain.”
Duane said that another researcher is interested in developing a stem cell treatment for Duffield. She hopes that an upcoming bike, jeep, and truck ride fundraiser will help pay for the research proposal and development of the treatment plan.
“The reason that the Lions Club was so motivated is because they know how important it is that Casey gets to the researcher as soon as possible,” Duane said. “Because at this point, science is not always able to reverse damage, but they can stop the progression. The sooner we can get her there, the sooner we can stop the progression. Maybe we’ll get lucky, and they’ll reverse it, but if we could just stop the progression, that would be awesome because that means she won’t end up on a trach and a vent for five years or seven years.”
There will be a motorcycle, jeep, and truck ride for Casey’s Cure will be on Saturday, Sept. 18, according to https://caseys-cure.org. It will start at Great South Harley Davidson in Newnan and end at the plaza by Wild Leap on Pierce Street and Main Street in LaGrange. Kickstands go up at 10:30 a.m., and the ride ends at 11:30 a.m.
There will be an after ride gathering at Pierce and Byron Hurst Streets from 11:30 a.m. to 2 p.m. There will be food trucks, a Beacon Brewing Co. beer tent, 50/50 and door prizes. Duane said the 50/50 means that a pot of money will be split between a winner and Casey’s Cure.
The event costs a $10 donation per rider, $10 per passenger, and $10 to only participate in the after ride gathering. Participants may donate more money if they choose to. This is a rain or shine event, and there are no refunds. Preregister online before Aug. 30 to have your name, your business name, or the name of a fallen loved one put on the event t-shirts. People can register the day of the event at Great South Harley Davidson in Newnan at 9:30 a.m.
The ride organizer, Vince Blevins from Chapter 8 of the Red Knights, is a retired Troup County firefighter, according to Duane.
“We kind of stumbled into each other,” she said. “I don’t want to be too corny, but every night, I go to bed and I say, ‘Please God, send help.’ And I’ve been really fortunate that people are kind of being dropped in front of me who say, ‘Well, you know what? I could do blah blah blah.’ And I think, ‘Thank you, God.’”
Duane said she met Blevins a couple of months ago.
“And he was such a blessing to me because I couldn’t have pulled this ride off without him,” Duane said. “So, he really deserves a lot of credit. And the Red Knights, because he’s recruiting the Red Knights to ride for us.”
Duane explained that the Red Knights are motorcyclists who are or were firefighters.
This event is being organized by The Red Knights Georgia, Chapter 8. Other event supporters and sponsors are RE/MAX Results/Rob Upchurch, Great South Harley Davidson in Newnan, Callaway Foundation, The Lions Club of LaGrange, the LaGrange Fire Department, and Wellstar Hospital System, according to the Eventbrite page for the event.
To register for the event, go to https://caseys-cure.org and click on the “Click here to register” button.
For more information on the benefit ride, email firstname.lastname@example.org.