09/05/2026
September 5th is the first official SETD5 Syndrome Awareness Day, launched by the SETD5 Syndrome Foundation to help families around the world feel seen and supported.
Our daughter lives with SETD5, and we’re proud to stand with her — and with every family navigating rare conditions. SETD5 can lead to developmental delays, intellectual disability, language challenges, low muscle tone, and sometimes medical complexities like seizures or chronic pain.
The foundation is working hard to fund research, advocacy, and community support. If you feel moved to learn more or get involved, their page has great resources.
💙 Today, we honor our daughter’s resilience and the entire SETD5 community.