STXBP1 Awareness Month 2026
Awareness Into Action
September is STXBP1 Awareness Month
Why September? The STXBP1 gene is located on chromosome 9, and September is the ninth month of the year. Each September, our global community comes together to raise awareness of STXBP1-related disorders, share our stories, strengthen connections, and inspire action.
This year, awareness is more important than ever.
Research is advancing. Our community is growing. We are building the tools, data, partnerships, and infrastructure needed to prepare for future clinical trials. And families around the world continue to drive this progress forward every day.
During STXBP1 Awareness Month 2026, we invite you to turn awareness into action.
Share. Participate. Fundraise. Learn. Connect.
Every action helps move us closer to better treatments and a cure.
We have many exciting activities in the works for 2026.
Watch here for new advocacy stories, updates on our STARR Natural History program, the launch of our 10th annual Move to Cure campaign fundraiser, shareable social updates, and plenty more.
STXBP1 in 2026
A Growing Community. Growing Momentum.
Today, 1,573 individuals with an STXBP1 diagnosis have been counted worldwide — and we know there are many more families still to find.
At the same time, STXBP1 research and therapeutic development are moving forward at an unprecedented pace.
Through our Fast Forward to Impact 2026–2028 Strategic Plan, the STXBP1 Foundation is working to:
Accelerate therapeutic development
Support promising approaches and create pathways that can move potential treatments closer to patients.
Prepare for clinical trials
Strengthen natural history data, clinical outcome measures, biomarkers, family preparedness, and other critical trial-readiness infrastructure.
Build biopharma interest
Bring more companies, researchers, investors, and partners into the STXBP1 field.
Support patients and families today
Provide education, resources, connection, and opportunities for families to meaningfully participate in the work ahead.
Our long-term vision is ambitious: a future with multiple approved disease-modifying therapies for STXBP1-related disorders.
Awareness helps us get there.
Move to Cure 2026
Every Move Brings Us Closer to a Cure
Move to Cure is the STXBP1 Foundation’s largest annual community fundraising campaign.
Throughout September, families, friends, and supporters around the world are walking, running, rolling, riding, dancing, and creating their own challenges to raise awareness and funds for STXBP1 research.
Our 2026 goal is to raise $100,000 to accelerate research and the development of better treatments for STXBP1-related disorders.
And this September, your impact can go even further. Thanks to a generous $25,000 matching gift from Clara Inspired, donations made during the matching period can have twice the impact.
Create a team. Start your own challenge. Support another fundraiser. Or simply make a donation.
However you choose to move, you are helping move STXBP1 forward.
Make Your Experience Count
New Caregiver & Clinical Trial Readiness Survey Launching September 15
Families and caregivers have knowledge that researchers simply cannot get anywhere else.
Beginning September 15, caregivers in the STXBP1 community will have an opportunity to participate in an important new survey designed to better understand the experiences, priorities, and perspectives of families — including how our community thinks about research and future clinical trials.
The STXBP1 Foundation is partnering with researchers from the European STXBP1 Natural History Study (ESCO) on this important project.
The information families provide can help researchers and our partners better understand what matters most to the STXBP1 community as we prepare for the next generation of research and clinical trials.
Your experience is data. Your perspective matters. Your voice can help shape what comes next.
Help Us Spread the Word
Did You Know?
One of the easiest ways to support STXBP1 Awareness Month is simply to help more people understand STXBP1-related disorders.
Our “Did You Know?” social media cards share important facts about STXBP1 in a format that is easy to download and share.
Post them throughout September and encourage your friends, family members, coworkers, clinicians, therapists, teachers, and broader networks to share them too.
Social cards are available in multiple languages so our community can help raise awareness around the world.
Download the whole set from the links below or get each individual card in the English version here.
English
Spanish
Portuguese
German
Dutch
French
Italian
Polish
Slovak
Norwegian
Swedish
Danish
Chinese