Haley Oyler

Fundraiser Profile

Participating in 2025 Million Dollar Bike Ride

Team Captain of SETBP1 Strong

I ride for my son Cole and all kids with SETBP1-HD and related disorders

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 research. Stand Strong with us and help us advance research for SETBP1-HD.

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. 75 cases worldwide have been published about SETBP1-HD and around 300 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!

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Organizations participating in the 2025 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. Funds from the 2025 Million Dollar Bike Ride are being distributed to teams through partnership with rare-disease nonprofit, Uplifting Athletes.