$0
Raised of $30,000
Erin Prosser (Lucy's mom)
Fundraiser Profile
Participating in 2026 Million Dollar Bike Ride
Team Captain of Lulu's Crew / STXBP1 Encephalopathy
Lulu's Crew Raises Scientific Funding for STXBP1
We are Lulu's Crew and we're here to change outcomes for children and families living with STXBP1. We have funded 14 scientific labs studying STXBP1 over the last 7 years and have significantly increased the scientific footprint of the disorder spurring seed grants for the scientific community to increase interest in STXBP1.
As a reminder STXBP1 is the neurodevelopmental disorder the our daughter Lucy Prosser (age 7) was born with -- a de novo genetic mutation resulting in severe to profound intellectual disability, hypotonia, seizures, autism, ataxia, and cortical vision impairment (CVI) among other symptoms. It's a game-changer for families and we're looking for a treatment and a cure because there are none.
The difference our riders and donors have made over the years is immeasurable. We are so grateful for your support.
About the Event
Jun 13, 2026
07:30AM
Donations 0
Organizations participating in the 2026 Million Dollar Bike Ride will receive the funds raised by their team. Your donation plays a pivotal role, allowing organizations to not only support rare disease research, but make a direct impact on patients and families in their rare disease community. Thank you!
Million Dollar Bike Ride is coordinated by Penn Medicine's Orphan Disease Center.