The Global STXBP1 Caregiver Survey is Live!

Dear STXBP1 Community,

This September, during STXBP1 Awareness Month, the STXBP1 Foundation and our collaborators at ESCO are launching something I've been looking forward to sharing with you: the STXBP1-RD Potential Future Therapies Caregiver Survey.

As gene therapies, RNA-based treatments, and other new approaches move closer to the clinic, researchers need to understand what actually matters to families living with STXBP1-RD: what you hope for, what worries you, and what would factor into a decision about a future clinical trial.

As a parent of an STX’er, I know these aren't easy questions, but your honest answers are exactly what researchers need. You don't need any prior knowledge of trials or therapies to take part, just your own experience.

This is one of the most direct ways we have, right now, to make sure future trials are designed around real family priorities, not assumptions, and to shape the education and resources the Foundation and ESCO build for all of us going forward.

The survey is anonymous, takes about 30 minutes, and can be completed in sections at your own pace.

Thank you, as always, for showing up for this community. Every response brings us one step closer to treatments, and to a cure.

With gratitude,
Charlene Son Rigby President, Board of Directors, STXBP1 Foundation