Haley Oyler

In 2026, I’m riding again in the Million Dollar Bike Ride with the #SETBP1Strong team — and this ride is deeply personal.

My son, Cole, is one of fewer than 250 individuals in the world diagnosed with SETBP1 haploinsufficiency disorder (SETBP1-HD). This rare genetic condition is caused by a tiny change in the SETBP1 gene on chromosome 18 — but its impact on daily life is anything but small.

For years, we searched for answers. After countless appointments and tests, Cole finally received his diagnosis at age 5 through whole exome sequencing. That diagnosis changed everything. It gave us clarity. It connected us to a community. And it gave us a direction for advocacy and research.

SETBP1-HD affects each individual differently, but for Cole it has meant:
• Childhood apraxia of speech
• Severe ADHD
• Autism
• Learning challenges

Many individuals in our community also face anxiety, motor delays, sleep disturbances, vision issues, and other neurological differences.

Right now, there are no targeted treatments for SETBP1-HD. But that can change.

Funds raised through the Million Dollar Bike Ride directly support research dedicated to understanding and treating SETBP1 haploinsufficiency disorder and SETBP1-related disorders. Every dollar brings us closer to better interventions, meaningful therapies, and real hope for families like ours.

With fewer than 350 diagnosed worldwide, our community is small — but we are strong, determined, and growing as awareness spreads and genetic testing becomes more accessible.

When you donate:
• You accelerate research
• You support families navigating the unknown
• You help move us closer to treatments

This ride is for Cole.
It’s for every child still waiting for a diagnosis.
And it’s for a future where rare diseases are no longer overlooked.

Thank you for being part of this journey and for supporting transformative rare disease research. Together, we can change what’s possible. 💙🚴‍♀️