We are thrilled to announce that registration is officially open for the 2026 SETBP1 Family & Research Conference, taking place November 6–8, 2026 in Austin, Texas at the DoubleTree Suites by Hilton Austin Downtown Capitol. This year’s conference will bring together SETBP1 families, researchers, clinicians, and advocates from around the world for three days of […]
🌟 Two Powerful SETBP1 Webinars You Won’t Want to Miss This spring, we’re bringing our community two exceptional learning opportunities — each led by world‑renowned experts who have shaped what we know about SETBP1 neurodevelopmental disorders. Whether you’re a newly diagnosed family or have been part of our community for years, these sessions offer clarity, […]
SETBP1Strong Returns to the Million Dollar Bike Ride 2026! We’re thrilled to announce that the SETBP1Strong Team is officially riding in the 2026 Million Dollar Bike Ride (MDBR)! On June 13th, 2026, we’ll gather in Philadelphia, PA—and around the world—to raise critical funds for SETBP1 neurodevelopmental disorder research. The Million Dollar Bike Ride brings together […]
Save the Date: 2026 SETBP1 Family & Research Conference Austin, Texas • November 6–8, 2026 DoubleTree Suites by Hilton Austin Downtown Capitol We’re excited to announce the dates for our next SETBP1 Family & Research Conference, bringing together families, clinicians, and researchers from around the world for a weekend of connection, learning, and collaboration. 🌟 […]
Big News: $25,000 Donation Match for the SETBP1Strong Team at the 2025 Million Dollar Bike Ride! We’re thrilled to announce that SETBP1 Society has secured a $25,000 donation match from a generous donor for our SETBP1Strong Team—and that means every dollar you give now goes twice as far to accelerate research for SETBP1 haploinsufficiency disorder […]
Join the SETBP1Strong Team in the 2025 Million Dollar Bike Ride! Registration is now OPEN! SETBP1 Society and the University of Pennsylvania Orphan Disease Center (UPenn ODC) invite you to participate in the Million Dollar Bike Ride. This annual giving festival brings together rare disease families, friends and supporters to cycle to raise funds for […]
First ever international SETBP1 conference brings together families, researchers, and supporting organizations 2/26/25, Kelsey Bennett
💙 𝐺𝑖𝑣𝑖𝑛𝑔𝑇𝑢𝑒𝑠𝑑𝑎𝑦, the global celebration of generosity and giving, is THIS TUESDAY, December 3rd! This inspiring movement highlights the causes that uplift our families, friends, and loved ones. 💙 How will YOU Give Hope and Lend a Hand this 𝐺𝑖𝑣𝑖𝑛𝑔𝑇𝑢𝑒𝑠𝑑𝑎𝑦? Here are some ways you can help: 1️⃣ Start a Fundraiser – Create a SETBP1 […]
The SETBP1 Family & Research Conference is THIS OCTOBER from Friday early evening on the 11th through Sunday lunch on the 13th in Austin, TX! Our Empowering Independence-themed conference provides you the opportunity to ask your burning questions from SETBP1 medical specialists, researchers and therapists, to hear about the latest SETBP1 research findings, to connect […]
The SETBP1 Family & Research Conference is THIS OCTOBER from Friday early evening on the 11th through Sunday lunch on the 13th in Austin, TX! Our Empowering Independence-themed conference provides you the opportunity to ask your burning questions from SETBP1 medical specialists, researchers and therapists, to hear about the latest SETBP1 research findings, to connect […]
