LOYAL. LOCAL. COMPLETE.
A local family’s fight to raise awareness for Frontotemporal Dementia (FTD) continues to make a profound impact, both in Edgar County and beyond.
Dawn and Timothy Kirby of Paris first began sharing their daughter Kara’s journey publicly following her tragic passing in January of 2023.
Kara, a nurse, wife, mother, and lifelong Paris resident, was diagnosed at just 29 years old with behavioral variant Frontotemporal Dementia (bvFTD). She battled the disease courageously until her passing at the young age of 33.
Since that time, Dawn Kirby has become a leading voice for FTD awareness. As an ambassador for the Association of Frontotemporal Degeneration (AFTD), she has worked tirelessly to educate families, advocate for earlier diagnoses and bring attention to the devastating illness that robbed her daughter of so much, so young.
This year, those efforts have been formally recognized. Illinois representative Adam Niemerg recently signed a resolution declaring Sept. 21- 28 as World FTD Awareness Week in Illinois. The resolution was passed and read on the floor of the Illinois House.
Next week, a matching proclamation will be presented by Paris Mayor Craig, honoring both Kara’s memory and the Kirby family’s work in shining a light on this under-recognized disease.
The official issuance will be made at the Monday, Sept. 22, city council meeting, which starts at 5:30 p.m.
For Kirby, these proclamations are more than symbolic.
“It does my heart good to know that Kara is still doing what God wanted her to do — bringing people closer to Him, and bringing awareness so that other families may find answers sooner than we did,” she said.
FTD, which affects the frontal and temporal lobes of the brain, causes changes in personality, behavior, language and mobility. It is often misdiagnosed, especially in young adults, and currently has no cure.
Despite the heartbreak, the Kirby family has chosen to channel their grief into purpose. Dawn Kirby regularly shares Kara’s story at community events, educational talks and through AFTD campaigns. She also organizes local gatherings, such as the Food for Thought awareness events, to give families a place to learn, connect and support one another.
“I’ve always prayed that something good would come from Kara’s journey,” Kirby said. “These proclamations, the conversations we’re having, the lives being touched — that’s Kara’s legacy living on.”
For more information about Frontotemporal Dementia and resources for families, visit www.theaftd.org.