Third annual ‘Walk with Charlie’ raises funds for pediatric rare disease research

Team Charlie is hosting its third annual Walk with Charlie, a community event that brings together community members, families, local businesses, medical professionals, and political leaders to walk in support of children facing rare and devastating diseases, and to stand alongside one extraordinary local child, Charlie Sims.

It will be 10:30 to 11:30 a.m. Sunday, June 7, at Prairie Elementary School, 500 Charles Ave., Naperville.

Anticipated dignitaries include Naperville Mayor Scott Wehrli, Congressman Bill Foster, Sen. Tammy Duckworth, Rush University Medical Center professionals, and many others.

The event is inspired by Charlie Sims, a 9-year-old Naperville boy living with CLN1 Batten Disease, a rare and fatal neurogenetic disorder that causes progressive loss of movement, vision, and cognitive ability. Until very recently, families facing this diagnosis were told there were no treatments and no hope.

That is beginning to change with the efforts of Team Charlie. Walk with Charlie creates awareness of devastating childhood diseases and supports Rush University Medical Center’s “N-of-1” Fund by raising funds to advance groundbreaking treatments for children with rare disease. One hundred percent of funds that are raised go directly to Rush in order to support research and treatment of pediatric rare disease.

Team Charlie as an organization was born out of love, after Charlie’s family received his fatal diagnosis in March 2023. Through the efforts of Rush and with cooperation from a biotech company, Charlie received approval from the FDA in the fall of 2023 to become the first child in the world to receive a gene therapy, which occurred in a ground-breaking trial that took place at Rush.

Since then, Rush has continued to expand its pediatric rare disease footprint, becoming a global hub for treatment of CLN1 Batten Disease and advancing new therapies once thought impossible.

Sadly, development of rare disease treatments does not fit traditional industry funding models, making the efforts of organizations like Team Charlie essential to help advance science and treatment. Efforts like this make progress possible, raising awareness and funds, and creating real pathways forward for children like Charlie.

Since 2023, the efforts of Team Charlie have helped advance science by funding access to groundbreaking treatments for many children that have come since Charlie. It is Charlie’s family’s way of paying it forward.

Community efforts like the Walk with Charlie advance life changing research, uplift families, and demonstrate of communities that shows up when it matters most.

Registration is free; all ages are welcome. From grandparents to toddlers — everyone walks together. Donations are encouraged; every dollar raised funds pediatric rare disease treatment and research directly at Rush University.

Learn more at GoTeamCharlie.org.