Illinois General Assembly - Full Text of HR0359

HR0359 LRB104 13253 ECR 25448 r

HOUSE RESOLUTION

WHEREAS, There is a need for statewide awareness of Frontotemporal Degeneration (FTD) disease and the suffering it causes individuals and communities that bear witness to its effects; and

WHEREAS, FTD is an underdiagnosed neurodegenerative disease that affects more than 60,000 people in the United States; the disease is typically found in people aged 21 to 80, with the largest percentage of people affecting being under the age of 65; and

WHEREAS, FTD can impact behavior, decision-making, personality, language, and/or movement, and the disease has an average life expectancy of seven to 13 years after diagnosis; and

WHEREAS, Due to FTD's low estimated prevalence in the U.S., many members of the medical community remain unfamiliar with the disease; and

WHEREAS, FTD is frequently misdiagnosed as Alzheimer's disease, Parkinson's disease, or a psychiatric condition, such as depression, and it takes a FTD patient about 3.6 years, on average, to get an accurate diagnosis; and

WHEREAS, There is currently no cure or treatment available to slow the progress of FTD; and

WHEREAS, 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; she 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; and

WHEREAS, Kara Kirby's story reminds us all of the need for awareness and support for a disease that is largely misunderstood, misdiagnosed, and underfunded; and

WHEREAS, Establishing a FTD Awareness Week will help increase understanding and support for this deadly disease; and

WHEREAS, Similar efforts are underway in other states across the country, including Maryland, Ohio, Oklahoma, Tennessee, and West Virginia; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE HUNDRED FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare September 21 through September 28, 2025 as FTD Awareness Week in the State of Illinois to bring attention to Frontotemporal Degeneration (FTD) disease.