Foundation raising money, awareness about birth defect Foundation boosts funding, awareness about birth defect

McKenzie Jones, the daughter of Shianna Still, helps place a numbered ball into a wire cage Friday during the Kourtnee’s Chiari Care Connection’s fundraiser. Each ball corresponded with the number on a Golden Ticket that was randomly drawn during the event. less McKenzie Jones, the daughter of Shianna Still, helps place a numbered ball into a wire cage Friday during the Kourtnee’s Chiari Care Connection’s fundraiser. Each ball corresponded with the number on a ... more Image 1 of / 1 Caption Close Foundation raising money, awareness about birth defect 1 / 1 Back to Gallery

For a group bringing attention to a birth defect that causes rare structural defects in the brain and skull, Friday was about awareness and thanks.

The Kourtnee’s Chiari Care Connection foundation spent the evening talking about chiari malformations while raising money to continue helping families that are dealing with the condition.

Autumne Willner, executive director of the foundation and Kourtnee Willner’s mother, said the foundation assists families with basic financial needs as their affected family member undergoes treatment for the malformation.

“There is no cure for it,” Autumne Willner said. “Often times, brain surgery is the only treatment for chiari malformations, and even then there are no guarantees.”

The organization, founded in 2015, has helped provide financial assistance to 24 families across the country. Friday’s fundraiser was the foundation’s largest event.

Kourtnee Willner was 14 when she was diagnosed with a chiari malformation.

Since her diagnosis in 2013, she has had two surgeries to decompress her brain and a spinal fusion to help prevent further damage from the scoliosis caused by the malformation. All three came within 18 months.

“She’s doing good, but she still has some high-pain days,” Autumne Willner said.

During Kourtnee Willner’s treatments, her family had a difficult time financially, emotionally and physically, Autumne Willner said. The foundation was created to help ease that burden for other families.

“We give financial assistance to families to help with stuff that can become a burden during treatments,” Autumne Willner said. “We help with things like gas, lodging as they go back and forth to doctors’ visits while they are off work.”

All the proceeds from Friday’s fundraiser will go to help more families, she said.

“We are blessed with what we get,” Autumne Willner said. “We do our best to work with what we bring in. God tends to provide what we need.”

In addition to financial assistance to families, the foundation awards two scholarships to people who have a chiari malformation.