Illinois HR 382: BATTEN DISEASE AWARENESS DAY

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 HR0382 - 104th General Assembly 

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HR0382LRB104 13732 ECR 26454 r

1HOUSE RESOLUTION

2 WHEREAS, Batten disease is a progressive and devastating 

3neurodegenerative childhood disease, with symptoms including 

4developmental delays, dementia, cognitive decline, vision 

5loss, seizures, and loss of motor skills, ultimately resulting 

6in premature death; and

7 WHEREAS, Batten disease is a rare genetic disease wherein 

8most of those affected inherit a recessive gene from each 

9asymptomatic parent; the disease inhibits the production of 

10essential levels of cellular enzymes, leading to the 

11accumulation of metabolic waste in brain cells, causing the 

12cells to lose function over time and die; and

13 WHEREAS, At least 14 different variants of Batten disease 

14have been identified, and these variants are most often 

15referred to as CLN1 through CLN14; and

16 WHEREAS, Due to its rarity, sufferers of Batten disease 

17often experience significant delays in being properly 

18diagnosed, with an accurate diagnosis sometimes taking years; 

19and

20 WHEREAS, Only a single variant of Batten disease, CLN2, 

21currently has an FDA-approved therapeutic option, which is an 

HR0382- 2 -LRB104 13732 ECR 26454 r

1enzyme replacement therapy intended to delay disease 

2progression; currently, numerous variants of the disease have 

3genetic-based therapies either in development or are being 

4administered to patients on an experimental basis; and

5 WHEREAS, The burdens of rare childhood diseases, and 

6Batten disease in particular, are significant, requiring 

7extensive utilization of medical, financial, caretaking, and 

8emotional resources on affected patients, their families, and 

9their communities; and

10 WHEREAS, Due to many rare diseases being p