Niemerg: FTD Awareness Week Sept. 21-28

DIETERICH, IL… State Representative Adam Niemerg (R-Dieterich) passed House Resolution 359 this year to declare September 21 through September 28, 2025, as FTD Awareness Week in the State of Illinois. This designation is intended to bring attention to Frontotemporal Degeneration (FTD) disease. FTD is an umbrella term for a group of brain diseases that mainly affect the frontal and temporal lobes of the brain. These areas of the brain are associated with personality, behavior and language.

"This disease was brought to my attention by the family of Kara Kirby, Dawn and Tim Kirby of Paris, who was diagnosed at the young age of 29 and passed away just four years later," said Rep. Niemerg. "Kara Kirby's story reminds us of the need for awareness and support for a disease that is largely misunderstood, misdiagnosed, and underfunded. Establishing an FTD Awareness Week will help increase understanding and support for this deadly disease."

Kara Kirby was diagnosed with a behavioral variant of FTD at the age of 29, and she was checked into the Mayo Clinic because no medical expert in her area could diagnosis her. Kara was cared for by her parents until this progressive, incurable disease took her life on New Year's Day in 2023 at the young age of 33.

Mrs. Kirby confirmed that on Monday of this FTD Awareness Week, the Paris City Council will present a proclamation for FTD Awareness Week. This event is open to the public and the meeting begins at 5:30 p.m.

"I have learned quite a bit about FTD this year, added Niemerg. "FTD is frequently misdiagnosed as Alzheimer's disease, Parkinson's disease, or a psychiatric condition, such as depression, and it takes a patient about three and a half years to get an accurate diagnosis. The actor Bruce Willis has a form of FTD and like his wife Emma, Dawn Kirby is working to educate people about this disease and connecting them with resources."

Rep. Niemerg encourages people to contact Dawn Kirby to learn more about FTD. Mrs. Kirby has given medical and educational presentations on the subject and can be reached by e-mail at: [email protected] or the Association for Frontotemporal Degeneration (AFTD) Facebook page at: https://www.facebook.com/TheAFTD for guidance and resources.