Why September? The STXBP1 gene is on the 9th chromosome and September is the 9th month of the year.
September is STXBP1 Awareness Month
September is all-things STXBP1 Disorders. 2020 was our second year of dedicating the entire month of September for STXBP1 Disorders and included a blitz of ongoing communications and activities. We worked together to create even more awareness for this rare genetic disorder, shared the very latest updates on research, and brought the community together … virtually.
what We did throughout the month
Webinar Series featuring Researcher Updates
4th Annual “Move to Cure” Run
Daily Social Media Updates
Community Spotlights
And lots more …
RecordedSessions
Read the abstracts and speakers’ bios
Webinar series virtual sessions
What We Know About STXBP1
Ingo Helbig, Sarah McKeown
Closed Caption Recording
Natural History Study
Matthijs Verhage
Closed Caption Recording
Genetic Therapies including ASOs
Ben Prosser, Ganna Balagura
Closed Caption Recording
STXBP1 Patient Registry at Simons
Wendy Chung
Closed Caption Recording
Small Molecule Strategies
Jacqueline Burre, Debra Abramov,
Noah Guiberson, Zach Grinspan
Closed Caption Recording
Roles of Different Neurons
Mingshan Xue
Closed Caption Recording
Did You Know?
Here’s updated info on STXBP1 Disorders in multiple languages - formatted as “Did You Know…” cards that are easily sharable on social media!
Move To Cure
Run, Walk, Hike, Bike
4th Annual Fundraising Event
5K and 9 Mile Challenge
Location: Wherever you are!
26 – 30 September 2020