Red and Blue Knights Ride for Casey’s Cure – LaGrange Daily News

Red and Blue Knights ride for Casey’s Cure

Published Wednesday 31 August 2022 at 9:00 am

This coming Saturday, Elks Lodge in LaGrange will host the second annual drive for Casey’s Cure to help raise money to fund research into muscular dystrophy.

Casey’s Cure’s namesake, Casey Duffield, suffers from a rare form of muscular dystrophy called Hereditary Myopathy with Early Respiratory Failure (HMERF). The disease is so rare that few people in the United States are aware of it.

HMERF is a progressively debilitating disease that causes progressive weakness and muscle wasting in the legs, hips, and airways, and eventually death.

Duffield was diagnosed with HMERF in the fall of 2017. Due to the rarity of the disease, little was known about it. Duffield’s father was also affected by the disease from an early age. She later attended nursing school and dedicated her life to becoming his full-time carer until his death in 2004.

At the time, doctors told Casey she was safe. So far, only men had manifested the disease and only 50 percent of women were thought to be carriers. That thought changed when she was in her early 30s and started having aches, pains and fatigue in her muscles, causing her to lose her footing and upper body strength.

Doctors initially thought she had limb-girdle muscular dystrophy, but blood tests later confirmed she had HMERF. When Casey was diagnosed, she and her mother, Chris Duane, searched for advocacy groups but were unable to find any due to the rarity of the condition. Two years later, Daune launched Casey’s Cure to support research into finding a cure for the rare disease and to let people know they are not alone.

Due to the severity of her condition, Casey struggles with daily muscle aches and sometimes depression that makes it difficult to do her job as a nurse, she said. But she doesn’t give up.

“I try to push myself to do things and make the most of life because I have a lower life expectancy,” Casey said.

That means doing things she sometimes doesn’t want to do, like taking a hike to a waterfall. Casey said she struggled tremendously on the hike, which was intended for beginners, but for her it was an expert-level trail. She said that despite the pain the next day, it was worth it and she has no regrets.

“I have to make the most of my time,” she said, noting that her family helps her get the most out of life.

Casey goes to weekly physical therapy sessions to help with her condition, but like everyone else, she has some days that are better than others.

Although Casey’s medical care is extensive, Casey’s Cure money goes solely to support research that may one day find a cure, not her medical care.

As one of only 11 people known to have the disease, Casey has provided tissue samples to the Charles River Lab and Ohio State University to help find a cure. Her tissues are also currently being studied at the University of Arizona Medical Center. They’ve asked for a second tissue donation, so the group is currently raising funds to bring to Arizona.

Duane shared that Arizona researchers hope to figure out what caused Casey’s muscle cells to start dying off when she hit her early 30s. Casey lived a relatively normal life until her muscles started dying after she was 30 years old. Finding out what triggered the effects of the disease could help find a cure.

Casey’s Cure aims to raise $20,000 this year. The local Red Knights (Chapter 8), a motorcycle group made up of past and present firefighters and their families, host the motorcycle ride again to raise funds for Casey’s Cure.

The benefit ride will be held at Elks Lodge at 905 S Davis Rd. at LaGrange on Saturday September 10th. Registration begins at 9 a.m., and the ride is scheduled to begin at 11 a.m

Retired firefighter Vince Blevins of the Red Knights pointed out that the drive will begin and end at the lodge with a route through LaGrange. The route was developed by the Blue Knights, a police motorcycle group who will join the ride. The route should take about an hour, he said. Jeeps and trucks are also welcome to join the ride.

The event will feature a 50/50 raffle as well as food, drink and door prizes.

About Ellen Lewandowski

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