About 200 people walked to raise money to research spinal cord diseases Sunday at the second-annual two-mile “Miracle Race for Mylee Grace,” a 3-year-old Valley resident who suffers from chiari disease.
Chiari and syringo are spinal cord diseases that affect one in every 1,000 Americans.
Mylee’s mother Sara Eaton, a co-sponsor of the event, said she and her co-sponsors have raised nearly $15,000 so far this year for research to combat these disorders, an improvement from last year’s $2,000.
“Mylee is the poster child for this disease,” Eaton said. She said her daughter inspired her to raise money and awareness about chiari and other related diseases.
Chiari malformation and syringomyelia are two related diseases that affect the spinal cord and cerebral fluid, said Mark Scarpone, CEO of American Syringomealia and Chiari Alliance Project, Inc.
In chiari malformation, the tonsils hang abnormally into the spinal canal, while in syringomyelia, fluid in the spinal chord creates a cavity that can destroy spinal tissue over time.
“One of our goals is educating physicians about what [the disorder] is,” Scarpone said, adding that many people are misdiagnosed.
The symptoms of the disorders include having trouble walking, paralysis and severe headaches, Scarpone said. He said there are 250,000 known cases in the U.S. and he believes there are many more that are undiagnosed.
Eaton agreed there is a lack of education about these disorders. She said spreading awareness about the signs and symptoms is one of her main goals.
Debbie Juengel, another event organizer, works with the AZ Syringo and Chiari Care and Support Group. Juengel, who suffers from post-traumatic syringo, said she is committed to providing an outlet for those who suffer from chiari and syringo.
“It’s a very scary thing when you first get diagnosed,” she said. “We want people to know we’re here.”
Juengel said the support group and the alliance project were able to get the state of Arizona to declare September “chiari awareness month,” which is already in place in many other states.
Her daughter, 26-year-old ASU alumna Danielle Juengel said she wanted to come out and support her mother and others with the disease.
“She’s in pain a lot,” she said. “She’s doing everything she can.”
Danielle Juengel helped children and parents who suffer from either disease to make greeting cards to sell at the event to benefit research.
ASU alum Shaun Calvin, 27, of Mesa said events like walks are good ways to spread awareness about lesser-known diseases.
More people got involved this year in planning the event, Calvin said.
There were more vendors that all donated proceeds to disease research. Some participants who walked had never heard of chiari or syringo until they signed up to take part, like psychology sophomore Kapri Gonzales.
Gonzales, who participated with her business Klime Clothing, said she had just learned about the diseases but was eager to help out the community.
“We want to try and help out other causes,” she said.
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