STXBP1 Awareness Month

September is Always STXBP1 Awareness Month

We continued to recognize September as STXBP1 Awareness Month and we had a lot of exciting activities run in 2024.

Created Awareness All Month Long

Introduced STXBP1 Community Connect

The newest program from the STXBP1 Foundation focused on providing opportunities for Connection, Education, Awareness & Support. We launched during STXBP1 Awareness Month with 4 brand new webinars and virtual sessions designed to get us together and get us moving forward.

Reimagined Our Move to Cure Event

The STXBP1 Disorders Move to Cure event has been our biggest fundraiser over the years and is a great way to help build awareness of STXBP1-related disorders. And, this year we redesigned the annual event to be different. Participating in the “Shine a Light on STXBP1” Move to Cure event empowers everyone to get involved in our community in lots of different ways. And, the funds raised enable us to continue the amazing work being done to further research towards better treatments and a possible cure for this rare genetic disease.

Helped the STXBP1 Community Get Ready for Clinical Trials

An up-to-date, robust, and readily available collection of patient data and bio-samples will empower researchers and industry partners to accelerate therapy development. The best way to help the community “Get Ready” right now is by completing as many of our active surveys and studies as possible.

Watch our webinar recording to hear all the details.

See how you can participate, download a helpful checklist, and how you can even make your STXer famous on our Pledge Wall all right here.  

Did You Know Social Cards

Here’s the most current information on STXBP1 Disorders formatted as “Did You Know…” cards that are easily sharable on social media. Please help spread our info by posting these 11 cards throughout the month!

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
Chinese

You can create awareness for STXBP1-related disorders all year long!