Spreading the word

Afflicted with a congenital brain disorder, Devin Kalisz is unable to work.
But she manages to stay busy, establishing a website, corresponding with the governor, and helping plan a multi-community fundraiser and awareness walk.
“Instead of sitting around feeling bad, I’m trying to help,” said Kalisz, who was diagnosed with a Chiari Malformation after a traffic collision in 2005.
Treatment included surgery to remove part of her skull, relieving pressure on her brain.
Organizers are working on Devin’s Diary Chiari Walk, set for later this year, perhaps in October.
“It’ll be great, a really good way to get information out to people,” Kalisz said.
Plans call for the combination walk, run, and bike fundraiser to run along M-15 from Ortonville, through Independence Township into Clarkston, then along Clarkston Road perhaps as far as Rochester.
So far, Kalisz and other organizers have put in four months on the project, working with local police and officials to clear the route.
“A lot of little things need to be done,” she said.
The walk would get people involved and informed about Chiari, Kalisz said.
“Our goal is to make this as big and as recognized as the Breast Cancer 3-Day Walk,” she said.
“The hardest thing is that people don’t understand (the condition). It’s nice to meet with people like myself. You feel alone until you meet people who are also going through it.”
Spreading the word including letters to Gov. Jennifer Granholm, resulting in a proclamation naming September as Chiari Awareness Month.
“It was through the help of many,” Kalisz said.
“It’s a big deal,” she said. “So many people have Chiari ? the hard part is that many haven’t been diagnosed with it.”
The proclamation helps spread the word about the walk, she said.
“We’ve had good support from the governor,” Kalisz said. “We’re excited ? it puts us more out there.”
For information on the walk and how to register as it is finalized, check the website at www.devinsdiary.com.
There, people can also volunteer or pledge a donation.