FTD AWARENESS WEEK

Illinois General Assembly - Full Text of HR0880

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Full Text of HR0880

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HR0880 - 104th General Assembly

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HR0880
LRB104 21578 ECR 37016 r
1
HOUSE RESOLUTION

2

WHEREAS, There is a need for statewide awareness of
3
Frontotemporal Degeneration (FTD) disease and the suffering it
4
causes individuals and communities that bear witness to its
5
effects; and

6

WHEREAS, FTD is an underdiagnosed neurodegenerative
7
disease that affects more than 60,000 people in the United
8
States; the disease is typically found in people aged 21 to 80,
9
with the largest percentage of people affected being under the
10
age of 65; and

11

WHEREAS, FTD can impact behavior, decision-making,
12
personality, language, and/or movement, and the disease has an
13
average life expectancy of seven to 13 years after diagnosis;
14
and

15

WHEREAS, Due to FTD's low estimated prevalence in the
16
U.S., many members of the medical community remain unfamiliar
17
with the disease; and

18

WHEREAS, FTD is frequently misdiagnosed as Alzheimer's
19
disease, Parkinson's disease, or a psychiatric condition, such
20
as depression, and it takes a FTD patient about 3.6 years, on
21
average, to get an accurate diagnosis; and

HR0880
- 2 -
LRB104 21578 ECR 37016 r
1

WHEREAS, There is currently no cure or treatment available
2
to slow the progress of FTD; and

3

WHEREAS, Kara Kirby was diagnosed with a behavioral
4
variant of FTD at the age of 29, and she was checked into the
5
Mayo Clinic because no medical expert in her area could
6
diagnosis her; she was cared for by her parents until this
7
progressive, incurable disease took her life on New Year's Day
8
in 2023 at the young age of 33; and

9

WHEREAS, Kara Kirby's story reminds us all of the need for
10
awareness and support for a disease that is largely
11
misunderstood, misdiagnosed, and underfunded; and

12

WHEREAS, Establishing a FTD Awareness Week will help
13
increase understanding and support for this deadly disease;
14
and

15

WHEREAS, Similar efforts are underway in other states
16
across the country, including Maryland, Ohio, Oklahoma,
17
Tennessee, and West Virginia; therefore, be it

18

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE
19
HUNDRED FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that
20
we declare September 28 through October 4, 2026 as FTD

HR0880
- 3 -
LRB104 21578 ECR 37016 r
1
Awareness Week in the State of Illinois to bring attention to
2
Frontotemporal Degeneration (FTD) disease.

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