The Global STXBP1 Caregiver Survey Will Remain Open Until October 27th

Written By Mark Quinlan

Dear STXBP1 Community,

Good news! We've extended the Global STXBP1 Caregiver Survey through October 27, giving more families an opportunity to share their experiences and help shape the future of STXBP1 research.

As the STXBP1 Foundation continues working to accelerate the development of treatments, understanding the experiences, needs, and priorities of caregivers is essential. The information gathered through this survey will directly inform our clinical trial readiness efforts, helping researchers and industry partners better understand what matters most to families as new therapies move toward clinical trials.

We are grateful to the families around the world who have already participated. As we enter these final two weeks, we especially encourage families here in the United States to add their perspectives. Your participation will help inform how future clinical trials are designed and conducted here in the U.S., ensuring that the experiences, needs, and priorities of American families are represented as new treatment opportunities emerge. Every family's voice matters, and together, we can build a clearer picture of the needs of our global STXBP1 community.

Already started but haven't finished? You're not alone!

More than 200 partially completed surveys are currently saved in the system. We know life gets busy, and that's exactly why we've extended the deadline. If you started the survey but were interrupted, your progress is saved, and you can pick up right where you left off.

A few things to know:

  • The survey takes approximately 30 minutes.

  • You can save your progress and finish at your own pace.

  • It is available in multiple languages.

  • Your responses are anonymous.

Ready to participate?

CLICK HERE TO START THE SURVEY

If you've already started, check your email (including your spam/junk folder) for the unique access link or code you received when you saved your progress.

New Deadline: October 27, 2026

Every response strengthens our collective voice and helps ensure that, as we advance toward clinical trials and future treatments, the priorities of STXBP1 families remain at the center of our efforts.

Thank you for being part of this important work.

Warmly,

Mark Quinlan
Executive Director
STXBP1 Foundation

Mark Quinlan
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