Illinois HR 359: FTD AWARENESS WEEK

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HR0359LRB104 13253 ECR 25448 r

1HOUSE RESOLUTION

2 WHEREAS, There is a need for statewide awareness of 

3Frontotemporal Degeneration (FTD) disease and the suffering it 

4causes individuals and communities that bear witness to its 

5effects; and

6 WHEREAS, FTD is an underdiagnosed neurodegenerative 

7disease that affects more than 60,000 people in the United 

8States; the disease is typically found in people aged 21 to 80, 

9with the largest percentage of people affecting being under 

10the age of 65; and

11 WHEREAS, FTD can impact behavior, decision-making, 

12personality, language, and/or movement, and the disease has an 

13average life expectancy of seven to 13 years after diagnosis; 

14and

15 WHEREAS, Due to FTD's low estimated prevalence in the 

16U.S., many members of the medical community remain unfamiliar 

17with the disease; and

18 WHEREAS, FTD is frequently misdiagnosed as Alzheimer's 

19disease, Parkinson's disease, or a psychiatric condition, such 

20as depression, and it takes a FTD patient about 3.6 years, on 

21average, to get an accurate diagnosis; and

HR0359- 2 -LRB104 13253 ECR 25448 r

1 WHEREAS, There is currently no cure or treatment available 

2to slow the progress of FTD; and

3 WHEREAS, Kara Kirby was diagnosed with a behavioral 

4variant of FTD at the age of 29, and she was checked into the 

5Mayo Clinic because no medical expert in her area could 

6diagnosis her; she was cared for by her parents until this 

7progressive, incurable disease took her life on New Year's Day 

8in 2023 at the young age of 33; and

9 WHEREAS, Kara Kirby's story reminds us all of the need for 

10awareness and support for a disease that is largely 

11misunderstood, misdiagnosed, and underfunded; and

12