I ride for Cole, for all individuals with SETBP1 haploinsufficiency disorder (SETBP1-HD) and for their families! I ride for hope! Hope for treatments that help our SETBP1 kids to not struggle every day. Hope for the future!

SETBP1 Society is partnering with the University of Pennsylvania Orphan Disease Center to raise funds for SETBP1-HD. Stand Strong with us and help us advance research for SETBP1-HD.

The Orphan Disease Center will match dollar for dollar funds all funds we raise above $20,000 and up to $30,000. 100% of the registration and donation funds will go towards SETBP1 disorder research!

Any donation helps whether it is $10, $25, $50, $100 or $2500 - every bit counts!

Our child, Cole, was diagnosed with SETBP1-HD. SETBP1-HD is a rare neurological disorder and causes symptoms including absent speech to expressive language delays, mild to severe intellectual disability,
autistic-traits or autism, developmental delays, fine and gross motor delays, seizures and ADHD. 47 cases worldwide have been published about SETBP1-HD and around 150 known individuals have the disorder.