In September, following the heartbreaking news of the passing of the first participant in the Capsida CAP-002 SYNRGY clinical trial, the European STXBP1 Consortium shared the message below with our community. Alongside it, we also share a letter from the child’s parents, a blog post from the STXBP1 Foundation, and a statement from Capsida.
A Difficult Community Update – STXBP1 Foundation
September 2025
To the STXBP1 Community in Europe and beyond,
The European STXBP1 Consortium is deeply saddened by the news of the passing of the first participant in the Capsida CAP-002 SYNRGY clinical trial. Our hearts go out to the family, and we stand with the global STXBP1 community in grief.
Moments like this remind us why our shared work matters so deeply. Although ESCO is not directly involved in this trial, we remain committed to supporting families, researchers, and clinicians as together we seek safe and effective treatments for STXBP1-related disorders.
We know that this news is difficult, and it may bring up many emotions and questions. As the safety review moves forward, we will share confirmed information as soon as it becomes available.
In solidarity,
The European STXBP1 Consortium (ESCO)