SETD1B is rare. The support shouldn't be.
We're here to connect families, share what we know, and fund the science that changes outcomes.
A Message from Our Founders
When our daughters were diagnosed with SETD1B-related disorder, the medical advice was simple: manage the seizures and wait. But for our children, and yours, waiting means more seizures, more setbacks, more days without answers. We founded this organization to move beyond managing symptoms and start discovering treatments that change what's possible for our children.
Nicole Bitler & Ann Payne
Founders, SETD1B Research Foundation
What is SETD1B
To Our SETD1B Families
We know this journey can feel isolating. You are not walking it alone. We are building something that didn't exist when we got our daughters' diagnoses – a real community, moving with urgency, dedicated to changing what's possible for children with SETD1B.
How you can help us move forward:
Join the Contact Registry
Your input as caregivers is the most powerful tool we have to develop treatments
To Researchers & Industry Experts
The SETD1B Research Foundation was born out of a refusal to accept the status quo. We co-founded this organization as two moms driven by a singular resolve: to identify disease-modifying treatments for our kids.
Our Partners in Research & Advocacy
Help us bridge the gap between science and therapy
From identifying biomarkers to screening compounds for immediate relief, every dollar you donate brings us closer to a disease-modifying treatment. Help us turn high-level research into life-changing reality.
