
STXBP1 Foundation
821439459
2017
HOLLY SPRINGS, NC 27540
stxbp1disorders.org
curestxbp1
stxdisorders
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News

🏔️ Join Us at the STXBP1 Summit+ Family Meeting! 📍Westminster, Colorado 🗓 July 18–20, 2025 🎟 Early Bird Registration Ends May 31! 🌟 Why Attend? ▪️Connect and build friendships with other STXBP1 families ▪️Presentations from STXBP1 experts to educate & inform ▪️Social events like our famous Dinner & Dance Party — bring your dancing shoes! ▪️Research opportunities to move science forward ▪️Family support sessions to empower and uplift Don’t Miss These Talks⬇️ ➡️Gene Therapy Development in the Lab – Mingshan Xue, PhD ➡️Clinical Trials from a Patient Perspective – Scott Demarest, MD ➡️SYNRGY Gene Therapy Clinical Trial Information – Capsida Biotherapeutics ➡️"How to Handle More Than You Can Handle" – Reconnecting with Yourself After a Rare Disease Diagnosis – Amanda Griffith-Atkins, MS, LMFT & Special Needs Parent 🚩 HOT TIP: Hotel rooms are filling up fast! Reserve now to guarantee our low rate. ⏰ Register by May 31 to lock in early bird pricing Registration & Hotel Reservations HERE⬇️ www.stxbp1disorders.org/2025-summit ⛰️ See you in Colorado! (fb)

➡️“STXBP1-related disorders present devastating challenges in communication, development, motor function and seizures. We are in dire need of targeted therapies that can improve the lives and functioning of our children and families,” said Charlene Son Rigby, STXBP1 Foundation President and Cofounder. 🔬Discoveries made by Dr. Mingshan Xue, Caroline DeLuca endowed scholar and principal investigator at Texas Children’s Duncan NRI, Cain Foundation Laboratories, and associate professor at Baylor, have advanced our understanding of STXBP1-DEE and supported the preclinical development of CAP-002. ➡️“The goal of my research was always to develop a therapy that not only addresses the symptoms of STXBP1-related disorder, but tackles the root causes of this disease,” said Xue. ➡️“The FDA clearance of the CAP-002 IND is a significant milestone for Capsida, the STXBP1 community, and the field of genetic medicine,” said Dr. Swati Tole, Chief Medical Officer of Capsida. “We look forward to initiating the SYNRGY clinical trial and dosing patients starting in the third quarter of this year with this potential first targeted therapy for STXBP1-DEE.” 📍Read More HERE in this article from Baylor College of Medicine ⬇️ https://clicktime.symantec.com/15xVmvjZR6Wjj2EEU1m6z?h=UL0_1o9oEyq5k3px9kBJQPEvBNVHHNAnwyHa57bBeCU=&u=https://www.bcm.edu/news/capsida-receives-fda-ind-clearance-for-its-first-in-class-iv-administered-gene-therapy-for-stxbp1-developmental-and-epileptic-encephalopathy #sciencelovecure #curestxbp1 #stxbp1strong #stxbp1 #stxbp1disorders #GeneTherapy #capsida #Baylor #clinicaltrials #SYNRGY (fb)

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About the organization
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Science Love CURE Our Mission Welcome to the STXBP1 Foundation a 501c3 dedicated to raising awareness and finding a cure for STXBP1Related Disorder a rare neurodevelopmental condition and genetic epilepsy. We work with families physicians scientists and pharmaceutical innovators. The STXBP1 Foundation was created by a group of dedicated parents. Our nonprofit is focused on advocacy driving research and providing our families and their physicians with information and resources.
Birth Defects, Genetic Diseases