Haley Oyler

I ride for Cole, for all individuals with SETBP1 haploinsufficiency disorder (SETBP1-HD) and related disorders 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. The Penn Medicine Orphan Disease Center hosts this event to raise money for research in rare diseases. Please consider donating to our cause and being a part of transformative research. 100% of your donation will go towards SETBP1-HD and related-disorders and Schinzel-Giedion Syndrome research. Stand Strong with us and help us advance research for SETBP1-HD.

The Orphan Disease Center will match dollar for dollar all funds we raise above $20,000 and up to $30,000.

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

Our son, 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 200 known individuals have the disorder.

How will your funds help the SETBP1 community?

There is no cure and no specific treatments for the life impacting SETBP1-HD. We are focusing all funds raised in the Million Dollar Bike Ride for SETBP1 neurodevelopmental disorders research focused on identifying underlying disease mechanisms or pre-clinical development of potential therapies or tools.

Learn more at www.setbp1.org/MDBR!