HR0382 104TH GENERAL ASSEMBLY

HR0382 LRB104 13732 ECR 26454 r

HOUSE RESOLUTION

WHEREAS, Batten disease is a progressive and devastating neurodegenerative childhood disease, with symptoms including developmental delays, dementia, cognitive decline, vision loss, seizures, and loss of motor skills, ultimately resulting in premature death; and

WHEREAS, Batten disease is a rare genetic disease wherein most of those affected inherit a recessive gene from each asymptomatic parent; the disease inhibits the production of essential levels of cellular enzymes, leading to the accumulation of metabolic waste in brain cells, causing the cells to lose function over time and die; and

WHEREAS, At least 14 different variants of Batten disease have been identified, and these variants are most often referred to as CLN1 through CLN14; and

WHEREAS, Due to its rarity, sufferers of Batten disease often experience significant delays in being properly diagnosed, with an accurate diagnosis sometimes taking years; and

WHEREAS, Only a single variant of Batten disease, CLN2, currently has an FDA-approved therapeutic option, which is an enzyme replacement therapy intended to delay disease progression; currently, numerous variants of the disease have genetic-based therapies either in development or are being administered to patients on an experimental basis; and

WHEREAS, The burdens of rare childhood diseases, and Batten disease in particular, are significant, requiring extensive utilization of medical, financial, caretaking, and emotional resources on affected patients, their families, and their communities; and

WHEREAS, Due to many rare diseases being progressive, including Batten disease, early diagnosis provides the best chance of a successful treatment or therapy; and

WHEREAS, Illinois is home to Rush University Medical Center, an institution recognized as one of only nine Batten Disease Centers of Excellence in the United States; and

WHEREAS, Dr. Elizabeth Berry-Kravis, a pediatric neurologist and professor of Pediatrics, Neurological Sciences, and Biochemistry at Rush University Medical Center, is also the clinic director of the Rush University Medical Center Batten Disease Center, where she works tirelessly on cutting-edge medicine and science to advance novel genetic treatments for children afflicted with rare diseases, including Batten disease; and

WHEREAS, Charlie Sims, an energetic and loving eight-year-old boy from Naperville, was diagnosed with Batten disease at age six and is living with the CLN1 variant; and

WHEREAS, Charlie Sims has undergone first-in-the-world experimental genetic treatments for his CLN1 Batten disease at Rush University Medical Center, under the supervision and care of Dr. Elizabeth Berry-Kravis, in an attempt to slow the progression of his disease and to establish valuable research data so that other children in the future may also receive novel and life-extending genetic therapies for Batten disease; and

WHEREAS, Following his diagnosis, Charlie Sims' family and friends created Team Charlie in 2023, establishing an organization committed to bringing awareness of Batten disease and other rare pediatric diseases to the public, engaging in philanthropy for the benefit of Batten disease and all rare disease families, and assisting in the advancement of novel genetic treatments for all children afflicted by rare pediatric diseases, including Batten disease; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE ONE HUNDRED FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare June 9, 2025 as Batten Disease Awareness Day in the State of Illinois in order to recognize and bring awareness to the rare disease population, including those living with Batten disease in Illinois, and to recognize the heroic and tireless efforts of Dr. Elizabeth Berry-Kravis and her esteemed colleagues at Rush University Medical Center as they attempt to save children afflicted with Batten disease by searching for treatments and a cure; and be it further

RESOLVED, That we commend Charlie Sims for advancing the scientific development of treatments for Batten disease for children everywhere, his family and friends for valiantly facing the difficulties of Batten disease, and the ongoing efforts of Team Charlie in their continued work of finding hope, giving love, and being good.