GRAND RAPIDS, Mich. — An annual walk that raises money for research into Chiari Malformation has been shifted to a virtual event due to the pandemic, but the organization is still seeking much needed donations to fund the search for a cure and to spread awareness about he condition.
Chiari Malformation is a structural deformity in the brain and skull.
“Nothing is easy on your own," Catherine Fell, a junior at Davenport University, told FOX 17 this week.
“The issues that it causes for me are mostly headaches. I'll get like numbness or tingling in my hands and feet at times.”
The student athlete was diagnosed with Chiari Malformation during the end of her time in high school. Eventually she would discover Conquer Chiari while in college.
“They're the first community and really the only community that I have that really understands what I'm going through and my condition,” she said.
Catherine started participating in the group's annual walks back in 2018. She began bringing teammates from her Davenport Pom squad to help with the event.
The group's connection with Catherine and her teammates has helped Conquer Chiari spread awareness into West Michigan. Several businesses from the Grand Rapids area have become corporate partners.
Sadly the group recently decided they would have to shift their typical walk to a virtual event.
“Usually there's a lot more that we can do... But we are still going to try to make it be like we are together, even though we're in separate places across across Michigan,” said Nichole Josey, Co-director for the Michigan branch of Conquer Chiari's Walk Across America.
But Josey says that despite the switch to a virtual event, the event this year will use the format to their advantage, hopeful that it will allow people who may not usually be able to get out of the house due to health ailments to be present.
“The problem with a rare disease is there are so many symptoms that align to many other things that could be going on in your body that it's hard for them to put them all together,” Josey told FOX 17.
She says because it's such a difficult condition to diagnose, making people simply aware that it exists, can potentially help them in their journey to identify health conditions.
"It can affect motor skills, it can affect walking, it can affect people's balance," Josey said.
She says it is usually a long road to getting a diagnosis of a Chiari Malformation.
"If it's not diagnosed right away through an MRI during childbirth... typically it takes some other instance, or some other trip to the hospital to usually have it diagnosed.”
You can visit Conquer Chiari's website to donate towards the group's efforts or to participate in the virtual Walk Across America event.