Conquer Chiari will hold a Walk Across America event on Sept. 20 to raise money for research on the neurological disorder Chiari malformation.

The disease affects more than 300,000 adults and children in the U.S., including 16-year-old Lizz Kruger of Butler.

Conquer Chiari is a nonprofit group dedicated to increasing education, awareness and research to improve the lives of those afflicted with the disease.

The disorder is characterized by structural defects in the cerebellum, the part of the brain that controls balance. Symptoms include headaches, neck pain, balance problems, trouble breathing and weakness in limbs.

Evidence of Lizz's problem began to surface two years ago, said her mother, Debbie Kruger.

"Over the course of two years, she went from just having headaches to having severe migraines,"Debbie said.

Because of her medical needs, Lizz had to pull out of Knoch High School in the fall and continue her education with cyber school. She lives at home with her parents, Debbie and Karl, and sister, Michaela.

"She's had five lumbar punctures, six MRIs, three CT scans, all kinds of tests, and a multitude of medications and combinations," Debbie said. "She's been through the wringer."

The only real treatment for Chiari malformation is surgery, which is often traumatic for the patient. Lizz will get the surgery Monday at UPMC Shadyside under the care of neurosurgeon Ghassan Bejjani.

"I truly felt that God had led me to him," Debbie said of Bejjani. "He's been so wonderful."

The family appreciated that Bejjani helped them make an informed decision about whether to have surgery, which is not always successful. Subsequent surgeries may also be necessary.

"He only suggested it when the quality of her life had become adversely affected," Debbie said. "And on a pain scale of 1 to 10, Lizz has had a migraine of 7 every day for a year."

Lizz also has difficulty swallowing now, which her mother said was a "red flag."

Lizz, who has been a Girl Scout since kindergarten, hopes to recover in time to complete her Gold Award project, for which she has yet to select a topic. The award is the organization's highest honor. Last year, just 5 percent of eligible girls received the award. Her upcoming surgery has delayed work on her project.

Lizz and her friends have became involved with Conquer Chiari.

Rachel Sell of Pittsburgh, who is helping to organize the walk, received surgery to treat her own Chiari malformation.

"We do not have a cure for this disease yet," Sell said. "But if you don't get surgery, it could make the damage done to your body permanent."

Because the disease is poorly understood, diagnosis is often delayed or inaccurate.

"There are usually five or six years before someone gets diagnosed with this disorder because it's relatively unknown," Sell said. "We want to get the word out there and prevent misdiagnosis.

Walk registration will start at 8:30 a.m. Sept. 20 and the walk will begin at 10 a.m. Participants should gather at the North Park Boat House, Pearce Mill Road, Allison Park.

The organization plans to hold a series of coordinated walks on the same day, with at least one walk in each state.

Participation is free and T-shirts will be provided to registered walkers with a minimum $20 donation. For more information, visit www.conquerchiari.org or contact organizer Rachel Sell at rachel.sell@yahoo.com or Conquer Chiari executive director Rick Labuda at 724-457-1959.

"I would love to see a whole bunch of people from Butler go down and walk," Debbie said. "That would be awesome."