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Fantastic @People interview with Bridget Finn #STXBP1 champion and mom to STX'er Flo, on her family's journey and advocacy work. So thankful for all you've done (so far!) and our ongoing collaboration! Let's #curestxbp1! loom.ly/Bf9_ZgE

Encouraging data from Encoded Therapeutics @ #ASGCT24 on #STXBP1 gene therapy work! Dose dependent rescue of seizure, motor, memory phenotypes in mice. 2 capsids tested in NHP with strategy for DRG toxicity risk w DT-A. Thanks Encoded Therapeutics for long-term partnership! loom.ly/TQrqD8Y

El síndrome STXBP1, una enfermedad rara con implicaciones sociales theconversation.com/el-sindrome-st… a través de The Conversation ES Asc. Sindrome STXBP1 stxbp1 David Abner stxbp1 italia STXBP1 Sverige

Our STXBP1 Researcher and Family Summit is 18-21 July. Don't miss it! Research Roundtable 18-19 July Family meeting 20- 21 July Joint dinner and dance party Friday night More information and register: stxbp1disorders.org/2024-summit

This was such a great meeting! 🗽 It was a privilege to attend the INSYNC-AS meeting representing the Loulou Foundation (#CDKL5) and to meet FAST and stxbp1 and RSRT and FamilieSCN2A and so many experts from academia, industry and the regulatory world. Thank

The Science + Love = CURE Podcast #15 is here! This is the #STXBP1 10 minute monthly update with Charlene Son Rigby Check it out here: youtube.com/watch?v=UKLfKf… Miss any of the previous updates? stxbp1disorders.org/podcasts 📷

The Q2 2024 #STXBP1 Census has been published: 1124 patients! We added 39 in Q2, including the first patients in Kazakhstan. #stxbp1globalconnect Asc. Sindrome STXBP1 stxbp1 italia stxbp1disorders.org/news/stxbp1-ce…

Kicking off our Research Roundtable at the #STXBP1 Summit 2024 today. We are so excited to welcome our research community to Pennsylvania! stxbp1disorders.org/2024-summit-re…

Tremendous two days with our #STXBP1 researchers at our Research Roundtable. We are accelerating science progress! Let's #curestxbp1 #STXBP1Summit2024

Summary of our July #STXBP1 Research Roundtable posted! So much research progress including in urgently needed therapies. And, we have so much still to do to #curestxbp1! #Innovation #Collaboration #raredisease stxbp1disorders.org/blog/impressio…

A portion of proceeds from today's 50/50 will benefit American Cancer Society Detroit Men Wear Pink and the stxbp1 Foundation on behalf of Reese Olson and Shelby Miller's respective #PlayersWeekend causes!

Two $70K grants for #STXBP1 research through the UPenn Million Dollar Bike Ride by ODC from The Orphan Disease Center @ UPenn. LOIs due 24 Sept! Thanks to our riders with #LulusCrew / Team STXBP1. orphandiseasecenter.squarespace.com/grants/event-f… #RareDisease Ben Prosser

Our proposal for an #ICD10 code is being presented now at the ICD10 C&M meeting. #STXBP1 needs a code!

STXBP1 is hiring an Executive Director! Help us expand and scale our work so we can achieve our mission to accelerate #STXBP1 research, and activate and support our community. stxbp1disorders.org/careers

Million Dollar Bike Ride Grant LOIs due this Friday, 20 Sept! $140K in grants for #STXBP1 research! Don't miss this grant cycle! stxbp1disorders.org/mdbr-2023 Let's #curestxbp1

Just in time for the last day of #STXBP1 Awareness Month, the STXBP1 Q3 2024 Census is published! 1157 patients with 33 patient identified this quarter. stxbp1disorders.org/news/stxbp1-ce… #STXBP1GlobalConnect Asc. Sindrome STXBP1

Congratulations to Capsida Biotherapeutics! They were just granted orphan drug designation by the FDA for CAP-002, a potential gene therapy for STXBP1-related disorders. Exciting news for the #STXBP1 community! stxbp1disorders.org/news/capsida-o…

Our census for Q1 2025 is published! 1,310 #STXBP1 patients in 57 countries +83 patients identified in Q1! stxbp1disorders.org/news/stxbp1-ce… #nopatientleftbehind #STXBP1GlobalConnect Asc. Sindrome STXBP1 stxbp1 italia Charline “STXBP1 France”

Big milestone for #STXBP1: 1st gene therapy clinical trial! Capsida Biotherapeutics cleared by FDA for IND for CAP-002. Novel IV AAV capsid that crosses the BBB. We have huge unmet need. Thrilled for Capsida & excited for the potential for this therapy. bit.ly/stxcap002ind

Our census for Q2 2025 is out! 1,378 #STXBP1 patients in 57 countries. +68 patients identified in this quarter! stxbp1disorders.org/census #nopatientleftbehind #STXBP1GlobalConnect Asc. Sindrome STXBP1 stxbp1 italia Charline “STXBP1 France” STXBP1