STXBP1 Awareness Month
September is Always STXBP1 Awareness Month
We are proud to recognize September as STXBP1 Awareness Month!
Why September? Well, the STXBP1 gene is on the 9th chromosome and September is the 9th month of the year; so, it kinda lined up nicely. Plus, with the start of the Back-to-School and Back-to-Work season, it is the perfect time to accelerate our mission of creating broad awareness for STXBP1-related disorders while everyone is recharged and ready for action. We ask you to join us in sharing information and updates online and offline all month long. Post a lot. Chat with your extended family, caregivers, friends, doctors, therapists, clinicians, researchers, co-workers, neighbors, teachers, the media, industry partners, and … everyone that you possibly can. Let’s get the word out wider about this rare genetic disease.
2025 Awareness Month Details are Coming
We have a lot of exciting activities in the works for 2025. So get ready to make lots of noise with us as we continue to blaze a trail together to find better treatments and a cure for STXBP1-related disorders.
You can expect new Community Connect webinars, new advocacy stories, updates on our STARR Natural History program, the launch of our 9th annual Move to Cure campaign fundraiser, shareable social updates, and plenty more.
We created broad awareness with these activities in 2024
Ran the new “Shine a Light on STXBP1” Move to Cure Annual Event
Introduced new Virtual Zoom Sessions & Webinars
Launched our new Community Connect program
Launched the new Get Ready Clinical Trial Readiness program
Shared our “Did You Know” social cards
Posted all the 2024 STXBP1 Summit+ recaps
And activities ran across the globe!
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 post these 11 cards throughout the month to help increase awareness!
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