Fighting with
Charlie.
Fighting for hope.
Charlie was diagnosed at age 6 with CLN1 disease — a fatal pediatric neurodegenerative disorder. Team Charlie was born from love. We raise awareness, fund the advancement of genetic therapies, and put goodness into the world.
FIND HOPE · GIVE LOVE · BE GOOD
Our Mission
Your support raises awareness
for all rare pediatric diseases.
It inspires hope by supporting breakthrough research and treatment that can change everything.
Raise Awareness
Shining a light on CLN1 disease, Batten Disease, and all rare pediatric illnesses — because a disease known is a disease closer to cured.
Fund Treatment and Research
100% of donations go directly to breakthrough pediatric rare disease research and treatment at Rush University Medical Center — no overhead, no exceptions.
Put Goodness Into the World
Community events and deep human connection — because no family should face this alone, and love is a form of medicine too.
His Story
Meet
Charlie.
“For so long, all we wanted was a diagnosis. If only we knew what the problem was, then we could start working on a solution.”
— Matthew Sims, Charlie's father
Charlie Sims is one of 30 million Americans living with a rare disease. He grew up loving to sing, dance, and play football — until subtle changes began at age four. Years of specialists and unanswered questions led to a diagnosis that would forever change his family: CLN1 disease, a fatal form of Batten Disease with no cure and no approved treatment. What happened next is a story of love, determination, and a family that refused to accept the impossible.
Read the full story
Research Partner
Rush University Medical Center
Pediatric Neurosciences F.A.S.T. Center
100%
of every donated dollar funds advances in treatment for pediatric rare disease
Get Involved
3rd Annual Walk With Charlie
Sunday
07
JUNE
Event Start
10:00 AM
Make a Difference
100% of Donations
Fund Advances in Treatment
for Pediatric Rare Disease
Every dollar raised goes directly to pediatric rare disease treatment and research at Rush University Medical Center.
Donate to Rush University FundProcessed securely through Rush University Medical Center
Get In Touch
We'd Love
to Hear
From You.
Whether you want to get involved, ask about the walk, or learn more about CLN1 disease — reach out and we'll get back to you.