https://www.stxbp1disorders.org/news daily 0.75 2026-03-31 https://www.stxbp1disorders.org/news/chords-for-callum-jon-stickley-to-lead-powerhouse-fundraising-concert monthly 0.5 2026-03-31 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1db6af43-8ede-4a87-a2d3-7342c045521a/IMG_3784.jpg News - Chords for Callum: Jon Stickley to lead powerhouse fundraising concert - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1774974223024-DBVEE3QJRR7RO2BL5ZY7/Jon+Stickley.png News - Chords for Callum: Jon Stickley to lead powerhouse fundraising concert - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/building-a-rare-disease-ecosystem-with-rafas-moonshot monthly 0.5 2026-02-23 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/baf4eb7e-9bfd-4c0c-bce9-8ac9205fd507/Screenshot+2026-02-23+at+9.29.22%E2%80%AFAM.png News - Building a Rare Disease Ecosystem with Rafa’s Moonshot - Make it stand out Life Sciences Today Podcast Episode #49 https://www.stxbp1disorders.org/news/community-update-capsida-clinical-trial-010826 monthly 0.5 2026-01-08 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/e3fea618-51c9-432f-8103-eef083375d11/Capsida+010726.png News - Community Update – Capsida Clinical Trial - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/rare-development-disorder-hasnt-kept-wellesley-swimmer-from-varsity monthly 0.5 2025-12-22 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/fcec3cc9-9723-4b76-accc-1661c9c3f96c/High+fives.png News - Rare development disorder hasn’t kept Wellesley swimmer from varsity - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/23bca73f-dacd-4af3-bad9-c6a526225bdb/swim.png News - Rare development disorder hasn’t kept Wellesley swimmer from varsity - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1d856b3b-1f1d-4342-a593-ae8806ba293a/Coach.png News - Rare development disorder hasn’t kept Wellesley swimmer from varsity - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/59b7079c-9a3c-4847-a004-5b9925b4e71b/Lily.png News - Rare development disorder hasn’t kept Wellesley swimmer from varsity - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/dc2c2b78-63cf-4ced-9cbc-73eb83279079/Team.png News - Rare development disorder hasn’t kept Wellesley swimmer from varsity - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/stxbp1-foundation-expands-starr-natural-history-study-with-new-site-at-rush-university-medical-center monthly 0.5 2025-11-05 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/973eb9b2-aa85-48b8-8625-ec0072c92f15/Berry-Kravtiz.png News - STXBP1 Foundation Expands STARR Natural History Study with New Site at Rush University Medical Center - Make it stand out Dr Elizabeth Berry-Kravitz runs a number of specialty clinics, including one for Fragile X - a rare genetic disease. She also sees many patients with neurogenetic and neurodevelopmental disabilities. https://www.stxbp1disorders.org/news/stxbp1-foundation-awards-innovation-grant-to-helen-willsey-for-gene-therapy-development monthly 0.5 2025-10-28 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/242e572d-ff42-4c25-bd23-ecfbec71f05a/Willsey+Lab+Grant.png News - STXBP1 Foundation Awards Innovation Grant to Helen Willsey for Gene Therapy Development - Make it stand out The Willsey Lab at UCSF focuses on uncovering the molecular mechanisms that drive autism spectrum disorder and its frequently co-occurring conditions. https://www.stxbp1disorders.org/news/stxbp1-foundation-awards-innovation-grant-to-soo-kyung-lee-for-gene-therapy-development monthly 0.5 2025-10-14 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1759513546685-R5HVZ7ZYOUI7FF9Z18DA/Lee+Lab+Grant.png News - STXBP1 Foundation Awards Innovation Grant to Soo-Kyung Lee for Gene Therapy Development - Make it stand out Dr Soo Lee, a well-known neurodevelopmental biologist, holds two named professorships at UB (aka, SUNY-Buffalo). Her studies have been centered around how motor neurons develop. https://www.stxbp1disorders.org/news/stxbp1-foundation-awards-innovation-grant-to-scott-baraban-for-high-throughput-drug-screen-in-zebrafish monthly 0.5 2025-10-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/238ffa6c-4af2-46e9-9e62-8f11e8c55d62/Baraban+Lab+Grant.png News - STXBP1 Foundation Awards Innovation Grant to Scott Baraban for High-throughput Drug Screen in Zebrafish - Make it stand out This study’s focus is the motor movement deficit seen in STXBP1 Disorder patients and recapitulated in stxbp1a mutant zebrafish. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/a3cb5cd8-becf-4fea-97aa-fb0a20ae0f78/Screenshot+2025-10-01+at+1.31.35%E2%80%AFPM.png News - STXBP1 Foundation Awards Innovation Grant to Scott Baraban for High-throughput Drug Screen in Zebrafish - Make it stand out The study will undertake a large-scale phenotypic drug screening in zebrafish https://www.stxbp1disorders.org/news/stxbp1-foundation-awards-innovation-grant-to-kyle-fink-for-crispr-activation-gene-therapy monthly 0.5 2025-10-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/ca6ef669-9535-434d-850e-9b537df85426/Fink+Lab+Grant.png News - STXBP1 Foundation Awards Innovation Grant to Kyle Fink for CRISPR activation Gene Therapy - Make it stand out The lab has a focus on rare, genetic, neurodevelopmental and neurodegenerative disorders. https://www.stxbp1disorders.org/news/stxbp1-has-an-icd-10-code monthly 0.5 2025-10-08 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/ba5e38f4-c248-44f5-a948-cf31572dc0ce/ICD-10+CODE+for+STXBP1+Color.png News - STXBP1 has an ICD-10 Code! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/2442e79e-3eda-43d5-ad90-d4fc49170e7d/Biz+Card.png News - STXBP1 has an ICD-10 Code! - Make it stand out Download PDF and Print at 100% scale on home printer for business card size https://www.stxbp1disorders.org/news/familymessage-tekzg monthly 0.5 2025-09-12 https://www.stxbp1disorders.org/news/a-difficult-community-update-capsida-clinical-trial monthly 0.5 2026-01-08 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1f69b6c8-35a0-4aa1-8a65-3e522c0c2a85/Capsida+09102025.png News - A Difficult Community Update – Capsida Clinical Trial - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/capsida-receives-fda-fast-track-designation-for-its-potential-first-in-class-iv-administered-gene-therapy-for-stxbp1-developmental-and-epileptic-encephalopathy monthly 0.5 2025-05-29 https://www.stxbp1disorders.org/news/capsida-receives-fda-ind-clearance-for-its-first-in-class-iv-administered-gene-therapy-for-stxbp1-developmental-and-epileptic-encephalopathy monthly 0.5 2025-05-27 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/a0b2b31b-5751-44e9-8824-bba4acc9c935/Screenshot+2025-05-26+at+4.42.57%E2%80%AFPM.png News - Capsida receives FDA IND Clearance for its first-in-class, IV-administered gene therapy for STXBP1-developmental and epileptic encephalopathy - Make it stand out Baylor College of Medicine in Houston, TX https://www.stxbp1disorders.org/news/5-marathons-in-5-days-for-charlie monthly 0.5 2025-05-17 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/f6687b92-d316-4c1e-bfaf-06476e77a7fd/BoothFamily.png News - 5 Marathons in 5 Days for Charlie - Make it stand out Dan Booth, pictured with his wife Lizzie and sons Charlie (l) and Freddie, said he would be supported by friends and family during his challenge https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/70f9f3ed-ac7b-4129-9a2d-7af6bfea5adf/Charlie.png News - 5 Marathons in 5 Days for Charlie - Make it stand out Charlie's mobility has been impacted as well and he has experienced a developmental delay https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/c727db46-7d08-4bf0-aec2-01df100a1d47/Screenshot+2025-05-17+at+3.40.31%E2%80%AFPM.png News - 5 Marathons in 5 Days for Charlie - Make it stand out Mr Booth said he hoped the trials in the US would replace faulty genes and ultimately improve the lives of about 5,000 children with the condition https://www.stxbp1disorders.org/news/capsida-presents-new-glp-toxicology-data-supporting-recent-fda-ind-clearance-of-its-first-in-class-iv-administered-gene-therapy-for-stxbp1-developmental-and-epileptic-encephalopathy monthly 0.5 2025-05-20 https://www.stxbp1disorders.org/news/capsida-to-present-progress-updates-at-the-asgct-annual-meeting-5ndnn monthly 0.5 2025-05-20 https://www.stxbp1disorders.org/news/capsida-to-present-progress-updates-at-the-asgct-annual-meeting monthly 0.5 2025-05-12 https://www.stxbp1disorders.org/news/stxbp1-census-q1-2025 monthly 0.5 2025-03-30 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/bae84712-2c4c-4ea1-a140-b49471757dc1/STXBP1+Census+Flags+Q1+2025.png News - STXBP1 Census - Q1 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/bae84712-2c4c-4ea1-a140-b49471757dc1/STXBP1+Census+Flags+Q1+2025.png News - STXBP1 Census - Q1 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/bae84712-2c4c-4ea1-a140-b49471757dc1/STXBP1+Census+Flags+Q1+2025.png News - STXBP1 Census - Q1 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/bae84712-2c4c-4ea1-a140-b49471757dc1/STXBP1+Census+Flags+Q1+2025.png News - STXBP1 Census - Q1 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/bae84712-2c4c-4ea1-a140-b49471757dc1/STXBP1+Census+Flags+Q1+2025.png News - STXBP1 Census - Q1 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/small-town-loud-voice monthly 0.5 2025-03-28 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9e3017be-90e1-4dde-896f-d9eb7c8e8925/Shamrock+Run.png News - Small Town. Loud Voice. - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9ba99768-b8b8-4f17-8257-ac5051706004/2023+SemperGratus.png News - Small Town. Loud Voice. - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/what-happens-when-a-rare-disease-drug-seems-to-work-but-the-health-care-system-doesnt monthly 0.5 2025-02-05 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1738777718845-ZX0QJHIZ7W3HKM60IRCM/Cristina.png News - What happens when a rare disease drug seems to work, but the health care system doesn’t? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/orphan-disease-center-2024-million-dollar-bike-ride-grants-139416-for-stxbp1-research-awarded monthly 0.5 2025-02-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4e445215-15ec-49a5-9eef-ab2ac45c7a54/ODC.png News - Orphan Disease Center 2024 Million Dollar Bike Ride Grants - $139,416 for STXBP1 Research Awarded - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/453b43fd-740e-4a26-b824-ec733640ce74/Prosser.png News - Orphan Disease Center 2024 Million Dollar Bike Ride Grants - $139,416 for STXBP1 Research Awarded - Make it stand out Laura Prosser, PhD https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/41833741-6add-4f15-a1fe-ad640a175914/Zhang.png News - Orphan Disease Center 2024 Million Dollar Bike Ride Grants - $139,416 for STXBP1 Research Awarded - Make it stand out Chaolin Zhang, PhD https://www.stxbp1disorders.org/news/stxbp1-foundation-accelerates-growth-with-addition-of-new-executive-director monthly 0.5 2025-01-15 https://www.stxbp1disorders.org/news/stxbp1-census-q4-2024 monthly 0.5 2025-03-29 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4cdb6a6b-0c1e-4f32-af61-1e8ca5464665/STXBP1+Census+Flags+Q4+2024.png News - STXBP1 Census - Q4 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4cdb6a6b-0c1e-4f32-af61-1e8ca5464665/STXBP1+Census+Flags+Q4+2024.png News - STXBP1 Census - Q4 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4cdb6a6b-0c1e-4f32-af61-1e8ca5464665/STXBP1+Census+Flags+Q4+2024.png News - STXBP1 Census - Q4 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4cdb6a6b-0c1e-4f32-af61-1e8ca5464665/STXBP1+Census+Flags+Q4+2024.png News - STXBP1 Census - Q4 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4cdb6a6b-0c1e-4f32-af61-1e8ca5464665/STXBP1+Census+Flags+Q4+2024.png News - STXBP1 Census - Q4 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/capsida-orphan-drug-designation monthly 0.5 2025-02-14 https://www.stxbp1disorders.org/news/fda-grants-orphan-drug-designation-to-capsida-biotherapeutics-for-potential-treatment-of-stxbp1-developmental-and-epileptic-encephalopathy monthly 0.5 2024-11-02 https://www.stxbp1disorders.org/news/advancing-toward-gene-therapies-for-rare-epilepsies monthly 0.5 2024-10-15 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4387e7eb-4df1-479a-8a88-75e7aba519e0/Screenshot+2024-10-15+at+1.11.41%E2%80%AFPM.png News - Advancing Toward Gene Therapies for Rare Epilepsies - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/b542f818-3af0-4840-b793-3bbca1f12b1b/Screenshot+2024-10-15+at+1.18.59%E2%80%AFPM.png News - Advancing Toward Gene Therapies for Rare Epilepsies - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/newly-published-voice-of-the-patient-report monthly 0.5 2024-10-02 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/86adfe75-9a4a-4855-b825-4c44a74de166/VoP_ss.png News - Newly Published “Voice of the Patient Report” - Make it stand out You can download and / or read the report anytime from here. https://www.stxbp1disorders.org/news/stxbp1-census-q3-2024 monthly 0.5 2024-09-30 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4a3d0075-e1c6-4bc1-9cf7-75acdb5be64f/STXBP1+Census+Flags+Q3+2024.png News - STXBP1 Census - Q3 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4a3d0075-e1c6-4bc1-9cf7-75acdb5be64f/STXBP1+Census+Flags+Q3+2024.png News - STXBP1 Census - Q3 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4a3d0075-e1c6-4bc1-9cf7-75acdb5be64f/STXBP1+Census+Flags+Q3+2024.png News - STXBP1 Census - Q3 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4a3d0075-e1c6-4bc1-9cf7-75acdb5be64f/STXBP1+Census+Flags+Q3+2024.png News - STXBP1 Census - Q3 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4a3d0075-e1c6-4bc1-9cf7-75acdb5be64f/STXBP1+Census+Flags+Q3+2024.png News - STXBP1 Census - Q3 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/six-patient-advocacy-groups-collaborate-to-co-fund-a-single-center-observational-study-of-seizure-types-in-rare-genetic-epilepsies monthly 0.5 2024-09-19 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/d7062450-e933-426b-8ec0-1f9d389089ff/Screenshot+2024-09-19+at+9.25.12%E2%80%AFAM.png News - Six patient advocacy groups collaborate to co-fund a single-center observational study of seizure types in rare genetic epilepsies - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/npr-stateside-podcast-one-familys-fight-to-find-a-cure-for-daughters-rare-genetic-disorder monthly 0.5 2024-08-20 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/f024826c-a071-4cc7-9714-3207456548cd/Screenshot+2024-08-20+at+9.42.36%E2%80%AFAM.png News - NPR Stateside Podcast: One family's fight to find a cure for daughter's rare genetic disorder - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/glowing-reviews-for-stxbp1-related-disorders-researcg monthly 0.5 2024-07-30 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1709746446484-5SDGZO7XBP8IX93ZJV9S/UofR.png News - Glowing reviews for STXBP1-Related Disorders Research - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/the-stxbp1-foundation-and-childrens-hospital-of-philadelphia-announce-phase-2-of-the-starr-study-for-clinical-trial-readiness-and-clinic-expansion monthly 0.5 2024-08-28 https://www.stxbp1disorders.org/news/stxbp1-census-q2-2024 monthly 0.5 2024-07-16 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/385276fd-bcac-4d3a-83fa-09ba32df55b3/STXBP1+Census+Flags+Q2+2024.png News - STXBP1 Census - Q2 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/385276fd-bcac-4d3a-83fa-09ba32df55b3/STXBP1+Census+Flags+Q2+2024.png News - STXBP1 Census - Q2 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/385276fd-bcac-4d3a-83fa-09ba32df55b3/STXBP1+Census+Flags+Q2+2024.png News - STXBP1 Census - Q2 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/385276fd-bcac-4d3a-83fa-09ba32df55b3/STXBP1+Census+Flags+Q2+2024.png News - STXBP1 Census - Q2 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/385276fd-bcac-4d3a-83fa-09ba32df55b3/STXBP1+Census+Flags+Q2+2024.png News - STXBP1 Census - Q2 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/over-3000-people-have-signed-our-petition-to-the-cdc monthly 0.5 2024-05-20 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/0624aa1d-0c06-48fd-8ad1-7de0c5222c42/ICD10.png News - Over 3,000 People Have Signed our Petition to the CDC for an ICD-10 Code - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/cain-labs-and-duncan-neurological-research-institute-researchers-find-a-novel-first-in-class-gene-therapy-alleviates-symptoms-in-animal-models-of-stxbp1-disorder monthly 0.5 2024-05-13 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/62dd2268-5c45-4a8a-a37b-94ffceec3277/Screenshot+2024-05-13+at+9.31.08%E2%80%AFAM.png News - Cain Labs and Duncan Neurological Research Institute researchers find a novel first-in-class gene therapy alleviates symptoms in animal models of STXBP1 disorder - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/strides-in-stxbp1-what-happened-last-month-in-stxbp1-research-1 monthly 0.5 2024-05-09 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/985594ca-e172-449b-b1c1-7f2d02284fdd/World+Research.png News - Strides in STXBP1: What Happened Last Month in STXBP1 Research? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/people-magazine-feature-article-on-flo monthly 0.5 2024-05-09 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9eeb0953-3fa6-492a-a3e5-72a6eb08c367/Flo.png News - People Magazine Feature Article on Flo - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/d167388c-d552-4404-a2ec-e15c69f165d5/Sam_Flo.png News - People Magazine Feature Article on Flo - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/encoded-therapeutics-highlights-progress-of-preclinical-programs-for-including-stxbp1-related-disorders-stxbp1-rd monthly 0.5 2024-04-25 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/dd044f5d-3819-4be6-89e1-0ad041c6ffcb/encoded+logo.png News - Encoded Therapeutics highlights progress of preclinical programs for including STXBP1-related disorders (STXBP1-RD) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/capsida-biotherapeutics-to-present-new-data-on-its-wholly-owned-gene-therapy-programs-in-genetic-epilepsynbsp monthly 0.5 2024-04-23 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/fd1a71c3-e18e-4f21-a66b-36554dfb2300/Capsida_Biotherapeutics_Logo.jpg News - Capsida Biotherapeutics to Present New Data on its Wholly Owned Gene Therapy Programs in Genetic Epilepsy  - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/strides-in-stxbp1-what-happened-last-month-in-stxbp1-research monthly 0.5 2024-04-13 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/cac352df-ef1a-42ed-bcd1-cd66872ea2ea/STXBP1+Research+%281%29.png News - Strides in STXBP1: What Happened Last Month in STXBP1 Research? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/stxbp1-census-q1-2024 monthly 0.5 2024-07-16 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/404dfa71-39d0-476a-a3bf-e386c1749faa/STXBP1+Census+Flags+Q1+2024.png News - STXBP1 Census - Q1 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/404dfa71-39d0-476a-a3bf-e386c1749faa/STXBP1+Census+Flags+Q1+2024.png News - STXBP1 Census - Q1 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/404dfa71-39d0-476a-a3bf-e386c1749faa/STXBP1+Census+Flags+Q1+2024.png News - STXBP1 Census - Q1 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/404dfa71-39d0-476a-a3bf-e386c1749faa/STXBP1+Census+Flags+Q1+2024.png News - STXBP1 Census - Q1 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/404dfa71-39d0-476a-a3bf-e386c1749faa/STXBP1+Census+Flags+Q1+2024.png News - STXBP1 Census - Q1 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/gy75u7t0fltxi3rgfr9cm4nr5ccphw monthly 0.5 2024-03-12 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1710188037619-IDJ7DR542IESL5O7QJTG/Screenshot+2024-03-11+at+1.13.17%E2%80%AFPM.png News - Strides in STXBP1: What Happened Last Month in STXBP1 Research? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/in-the-news-navigating-the-system monthly 0.5 2024-03-11 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/093ce065-2229-4f41-bd50-8035d7658369/Screenshot+2024-03-11+at+11.39.01%E2%80%AFAM.png News - In the News: NAVIGATING THE SYSTEM - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/strides-in-stxbp1-january-2024 monthly 0.5 2025-05-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1710183310045-BA9CR4EYM7OCD8ZVQXOU/Screenshot+2024-03-11+at+11.54.47%E2%80%AFAM.png News - Strides in STXBP1: What Happened Last Month in STXBP1 Research? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/in-the-news-25000-grant-awarded-to-university-of-richmond monthly 0.5 2024-03-06 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/32ab0720-e24b-4a69-91c9-44195e60a4f2/Richmond.png News - In the News: $25,000 Grant Awarded to University of Richmond Researcher - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/729608b2-07d9-4690-8c38-f934a47592a1/Zebra.png News - In the News: $25,000 Grant Awarded to University of Richmond Researcher - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/tigers-pitcher-shelby-millers monthly 0.5 2024-03-06 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/021d86ad-0206-4aa5-bf31-ac050feb082e/Screenshot+2024-02-23+at+1.03.49%E2%80%AFPM.png News - In the News: Tigers Pitcher Shelby Miller's Career Renaissance Might Not Have Happened if Not for His Son - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/orphan-disease-center-2023-mdbr monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/upliftingathletes-noah-2024 monthly 0.5 2025-05-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/205494de-42f6-4e85-8e84-35d09721e751/Picture1.png News - Uplifting Athletes and STXBP1 Foundation Fund $20,000 Grant to Dr. Noah Guiberson at Weill Cornell Medicine - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/stxbp1-census-q4-2023 monthly 0.5 2024-07-16 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/5bc44aca-ab2e-4489-b1e5-3300e1d5aa6d/STXBP1+Census+Flags+Q4+2023.png News - STXBP1 Census - Q4 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/5bc44aca-ab2e-4489-b1e5-3300e1d5aa6d/STXBP1+Census+Flags+Q4+2023.png News - STXBP1 Census - Q4 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/5bc44aca-ab2e-4489-b1e5-3300e1d5aa6d/STXBP1+Census+Flags+Q4+2023.png News - STXBP1 Census - Q4 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/5bc44aca-ab2e-4489-b1e5-3300e1d5aa6d/STXBP1+Census+Flags+Q4+2023.png News - STXBP1 Census - Q4 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/5bc44aca-ab2e-4489-b1e5-3300e1d5aa6d/STXBP1+Census+Flags+Q4+2023.png News - STXBP1 Census - Q4 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/in-the-news-immedica-granted-orphan-designation-for-glycerol-phenylbutyrate-in-stxbp1-related-disorders monthly 0.5 2025-05-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/f6bdc9a7-d119-41ce-87ed-0f8c0e861626/Immedica.jpg News - Immedica granted orphan designation for glycerol phenylbutyrate in STXBP1-related disorders - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/in-the-news monthly 0.5 2025-05-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/51db45a6-bda4-4158-8db8-c94763c0bf2a/Screenshot+2023-11-14+130807.png News - STXBP1 Foundation NAMED “2023 TOP-RATED NONPROFIT” by GreatNonprofits - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/lily-kahrl-an-unstoppable-spirit monthly 0.5 2025-05-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/725aeedd-caab-45bc-9d9e-ef6ff1f9bf30/Screenshot+2023-10-24+134137.png News - In The News: An Unstoppable Spirit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/c7d12e6e-289a-4e64-b6ba-c96ca4af8433/Screenshot+2023-10-24+134047.png News - In The News: An Unstoppable Spirit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/7ed05bce-4ae5-4b89-887b-260a75c372be/Screenshot+2023-10-24+134203.png News - In The News: An Unstoppable Spirit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1d17065c-438d-4270-897e-7ca4ac9b8c6e/Screenshot+2023-10-24+134230.png News - In The News: An Unstoppable Spirit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/6b0a1fe8-8685-46a6-95e1-2e6b6f486e7d/Screenshot+2023-10-24+134115.png News - In The News: An Unstoppable Spirit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/sharing-the-voice-of-the-stxbp1-community-with-the-fda monthly 0.5 2025-05-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/f3a17cc7-6def-40b6-9a03-281ba911c4d8/FDA%2B%281%29.png News - Sharing the Voice of The STXBP1 Community with the FDA! - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/stxbp1-census-q3-2023 monthly 0.5 2024-07-16 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1e8b66a8-fe2b-4439-a468-c3cd26ca97d0/STXBP1+Census+Flags+Q3+2023.png News - STXBP1 Census - Q3 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1e8b66a8-fe2b-4439-a468-c3cd26ca97d0/STXBP1+Census+Flags+Q3+2023.png News - STXBP1 Census - Q3 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1e8b66a8-fe2b-4439-a468-c3cd26ca97d0/STXBP1+Census+Flags+Q3+2023.png News - STXBP1 Census - Q3 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1e8b66a8-fe2b-4439-a468-c3cd26ca97d0/STXBP1+Census+Flags+Q3+2023.png News - STXBP1 Census - Q3 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1e8b66a8-fe2b-4439-a468-c3cd26ca97d0/STXBP1+Census+Flags+Q3+2023.png News - STXBP1 Census - Q3 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/stxbp1-disorders-in-the-news monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/7898444f-7a70-4404-b8c4-e340d644d727/LA+Dodgers.png News - In The News: How an STXBP1-related Disorder Diagnosis Changes a Dodgers Pitcher's Life - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/4mvj7pxvmx77rbs1cd1jv01fwdvo52 monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/082906aa-2166-4b6c-9299-e0f222a55830/STARR_final.png News - STXBP1 Foundation Announces STARR Study for Clinical Trial Readiness - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/preview-of-2023-stxbp1-summit-science-highlights monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/stxbp1-foundation-organizes-5th-annual-family-conference-for-stxbp1-related-disorders monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/stxbp1-census-q2-2023 monthly 0.5 2024-07-16 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/094d34da-896a-4907-9367-5bdcc8622c16/STXBP1+Census+Flags+Q2+2023.png News - STXBP1 Census - Q2 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/094d34da-896a-4907-9367-5bdcc8622c16/STXBP1+Census+Flags+Q2+2023.png News - STXBP1 Census - Q2 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/094d34da-896a-4907-9367-5bdcc8622c16/STXBP1+Census+Flags+Q2+2023.png News - STXBP1 Census - Q2 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/094d34da-896a-4907-9367-5bdcc8622c16/STXBP1+Census+Flags+Q2+2023.png News - STXBP1 Census - Q2 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/094d34da-896a-4907-9367-5bdcc8622c16/STXBP1+Census+Flags+Q2+2023.png News - STXBP1 Census - Q2 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/combinedbrain-is-traveling-to-an-industry-conference-near-you-help-the-stxbp1-foundation-build-our-biomarker-repository monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/006154a4-fe31-40f0-996e-a2b41731ab2b/Details.png News - Help the STXBP1 Foundation build our biomarker repository. Work with our partner, COMBINEDBrain, at any industry conference near you. - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/b4c1fd74-63da-48ad-a559-63a4661e38b8/Calendar.png News - Help the STXBP1 Foundation build our biomarker repository. Work with our partner, COMBINEDBrain, at any industry conference near you. - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/59c7daec-2c43-4904-a4cc-7547e63dba05/Biomarker.png News - Help the STXBP1 Foundation build our biomarker repository. Work with our partner, COMBINEDBrain, at any industry conference near you. - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/stxbp1-census-q1-2023 monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/penn-rare-disease-scientist-studies-daughters-epilepsy-wins-grant monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/e597bd13-bc26-4bab-92c2-000747f708b8/PHL.jpg News - Penn Rare Disease Scientist Studies Daughter's Epilepsy, Wins Grant - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/rare-in-times-square monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/bd061257-904b-4ef6-95c8-5ff5b3b2d0a2/Rare_NYC.png News - Rare in Times Square - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/25-million-gift-to-penn-medicine-and-childrens-hospital-of-philadelphia-establishes-center-for-epilepsy-and-neurodevelopmental-disorders monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1cdd404d-0fa2-4d37-af1b-6fb4ec41e8cf/Benjamin+Prosser_family_teaser.png News - $25 Million Gift to Penn Medicine and Children’s Hospital of Philadelphia Establishes Center for Epilepsy and Neurodevelopmental Disorders - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/orphan-disease-center-2021-million-dollar-bike-ride-grant-awards-announced-ymjk6 monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/uplifting-athletes-and-stxbp1-foundation-fund-20000-grant-to-dr-alex-felix-at-university-of-pennsylvania monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/unlocking-stxbp1-through-electronic-medical-records monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/the-2022-stxbp1-summit-a-personal-reflection-by-dr-ingo-helbig monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/grants-available-for-research-on-therapeutic-development-for-stxbp1-disorders monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/85k-raised-atfcl-builders-golf-tournament-7wf39 monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/stxbp1-disorders-featured-on-detroits-npr-station monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9b1ee9b3-02ef-4ef4-b83d-d8f828bb0f48/Flourish.png News - STXBP1 Disorders Featured on Detroit's NPR station - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/annual-report-2021-published monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/bcc39a2d-7d01-4d0b-9b51-b3519fdd90cf/2021+Highlights.png News - Annual Report 2021 Published - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/stxbp1-foundation-participates-in-rare-disease-awareness-month monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/3cbc067f-3176-4a41-8661-c09f549cfd73/Logo+Rare+Disease+Day.png News - STXBP1 Foundation Participates in Rare Disease Awareness Month - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/eurordis-welcomes-stxbp1-disorders-to-its-association monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4199bbb8-0446-4d13-9999-a78e02319feb/eurordis_horizontal_members_rvb.jpg News - EURORDIS Welcomes STXBP1 Disorders to its Association - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/charles-chen-wins-young-investigators-award-for-stxbp1-research monthly 0.5 2024-03-29 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/40cd0b96-461a-449a-854a-3e0cd2fc14f5/Charles.png News - Charles Chen Wins Young Investigators Award for STXBP1 Research - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/orphan-disease-center-2021-million-dollar-bike-ride-grant-awards-announced monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/the-stxbp1-foundation-announces-a-new-grant-awarded-of-1544753-to-the-heller-laboratory-of-neuroepigenetics-at-the-perelman-school-of-medicine-at-the-university-of-pennsylvania monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/c6b04b62-10c7-4d9a-988f-1e9fea799b8a/Ned.jpg News - The STXBP1 Foundation announces a new grant awarded of $154,753 to the Heller Laboratory of Neuroepigenetics at the University of Pennsylvania - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/news/disease-concept-model-for-stxbp1-disorders monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/stxbp1-foundation-awards-2-research-grants-to-researchers-at-columbias-institute-for-genomic-medicine monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/rarebase-launches-a-neuroscience-drug-discovery-platform-collaborating-with-stxbp1-foundation-and-14-other-rare-disease-patient-organizations monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/combinedbrain-duke-orca-grant monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/ciitizen-natural-history-study-starts-recruitment-april-16 monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/4-phenylbutyrate-clinical-trial-starting-recruitment monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/odc-mdbr2020 monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/rare-epilepsy-network-ren-gets-to-know-stxbp1 monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/nord-profiles-stxbp1-foundation-president-in-head-of-the-herd monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/stxbp1-foundation-president-presents-at-healx-webinar monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/the-stxbp1-foundation-has-been-approved-to-become-a-platinum-nord-member-organization monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/pilot-grant-to-fund-stxbp1-encephalopathy-intervention-research-at-weill-cornell-medicine monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/mike-boland-is-sfari-2020-research-awardee monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/claire-jacobs-awarded-aes-grant-to-study-stxbp1 monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/jaxsons-story-using-telemedicine-to-reach-children-with-rare-genetic-epilepsies monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/lucys-story-going-all-in-to-cure-a-rare-disease monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/stxbp1munc18-1-haploinsufficiency-impairs-inhibition-and-mediates-key-neurological-features-of-stxbp1-encephalopathy monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/odc monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/stxbp1-foundation-president-profiled-as-global-genes-rare-leader monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/news/2016/1/27/new-garden-75pxa monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1576824469821-3XEWA8POTMBBS4BBP1CT/BenProsser3969.jpg News - 1st Research Funding Award https://www.stxbp1disorders.org/news/tag/Texas+Children%27s+Hospital monthly 0.5 https://www.stxbp1disorders.org/news/tag/epilepsy monthly 0.5 https://www.stxbp1disorders.org/news/tag/Baylor+College monthly 0.5 https://www.stxbp1disorders.org/news/tag/STXBP1+Disorders monthly 0.5 https://www.stxbp1disorders.org/news/tag/mouse+model monthly 0.5 https://www.stxbp1disorders.org/news/tag/Mingshan+Xue monthly 0.5 https://www.stxbp1disorders.org/news/tag/GABAergic+neurons monthly 0.5 https://www.stxbp1disorders.org/news/tag/rare+genetic+diseases monthly 0.5 https://www.stxbp1disorders.org/events daily 0.75 2026-02-12 https://www.stxbp1disorders.org/events/american-society-of-gene-cell-therapy monthly 0.5 2026-02-12 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/ea76b184-85fe-40a9-a878-2cee2378cd6b/Boston.png Events - American Society of Gene & Cell Therapy - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/rare-disease-day-3 monthly 0.5 2025-12-19 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/dd635fb9-c882-41bc-9039-29145e646a71/NRD-2404+RDD_Social+Media+Assets.png Events - Rare Disease Day - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/zqguf87bcl1vo0ewrl5ozwh0w2j1ew monthly 0.5 2025-12-09 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1765301395962-Z4LRLQ09XVF8AOPCFUJA/Hilton.png Events - 2026 STXBP1 Summit+ - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/asgct monthly 0.5 2025-05-14 https://www.stxbp1disorders.org/events/million-dollar-bike-ride-2 monthly 0.5 2025-05-08 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/5b41d99f-7f4f-43aa-8227-a6bab8d40ebb/MDBR_Lucy.png Events - Million Dollar Bike Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/combinedbrain-roadshow monthly 0.5 2025-06-05 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/e867804b-a9a9-4890-9002-1c190040da9b/Roadshow.png Events - COMBINEDBrain Roadshow - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1619372425984-2BTIZ4ZC9ADP847SDM41/CombinedBrainLogo-color.png Events - COMBINEDBrain Roadshow - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/seizure-training-webinar monthly 0.5 2025-04-03 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/2b9f3614-5ce1-4ee0-b0a6-6e8c410cce7a/Screenshot+2025-04-03+at+1.04.12%E2%80%AFPM.png Events - Seizure Training Webinar - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/rare-disease-day-2 monthly 0.5 2025-03-08 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/b3fb818a-7e66-4f2f-a3d0-dfbdd45c431b/RDD_2025_banner_Facebook.png Events - Rare Disease Day - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/2025-aes monthly 0.5 2024-12-14 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1674344904866-GAXQJOCEF8S69WHDB8S3/aes_logo.png Events - 2025 AES - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/2025-stxbp1-summit monthly 0.5 2024-12-14 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/debc5595-11fd-416b-a5aa-3176f8455a8c/Summit_All.jpg Events - 2025 STXBP1 Summit+ - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/giving-tuesday monthly 0.5 2024-11-23 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/2b8f49d8-b19c-4d6c-8e27-e061c413628b/Giving+Tuesday.png Events - Giving Tuesday - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/2nd-european-stxbp1-summit-stxbp1-research-roundtable monthly 0.5 2025-02-22 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/0c3d9c6d-8dd5-4a9c-9dbb-a3a31895439f/Screenshot+2024-10-08+at+11.11.03%E2%80%AFAM.png Events - 2nd European STXBP1 Summit & STXBP1 Research Roundtable - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/nord-breakthrough-summit monthly 0.5 2024-03-04 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/50280c9c-ea78-44ea-8c56-562104761d63/NORD_Oct2024.png Events - NORD Breakthrough Summit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/white-house-rare-disease-forum monthly 0.5 2024-02-27 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/de13f5b8-ff0a-4267-aaea-83811b5f0dce/Rare+Disease+Forum+Social+Graphic.png Events - White House Rare Disease Forum - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/nord-living-rare-living-stronger monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/92f08218-b813-4586-84a9-c4ab8e9fdd5b/Screenshot+2024-01-26+at+4.58.40%E2%80%AFPM.png Events - NORD Living Rare Living Stronger - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/week-in-rare monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1696959190015-LCC624JDEYLEOTZ1R6UI/Screenshot+2023-10-10+at+10.31.51%E2%80%AFAM.png Events - Week in Rare - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/million-dollar-bike-ride-1 monthly 0.5 2024-03-10 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/d05cf5e4-db4f-421a-ab17-c73a6c4731ba/MDBR.png Events - Million Dollar Bike Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/rare-disease-day-1 monthly 0.5 2024-02-27 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/85d49f74-b9a1-494c-b5c2-ce1d5811e68b/fb_eventcover1200_628_.png Events - Rare Disease Day - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/aes-annual-conference monthly 0.5 2024-11-08 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1674344904866-GAXQJOCEF8S69WHDB8S3/aes_logo.png Events - AES Annual Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/mechanisms-of-epilepsy-and-neuronal-synchronization monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1696959746006-LBG2LD72GFPUOJ9JNR15/Screenshot+2023-10-10+at+10.41.54%E2%80%AFAM.png Events - Mechanisms of Epilepsy and Neuronal Synchronization - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/global-genes-week-in-rare monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1696959190015-LCC624JDEYLEOTZ1R6UI/Screenshot+2023-10-10+at+10.31.51%E2%80%AFAM.png Events - Global Genes Week in Rare - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/fda-externally-led-patient-focused-drug-development-meeting monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/eb82dbb3-ad5f-44de-931a-16c11bc99a70/Screenshot+2023-10-06+at+12.50.31%E2%80%AFPM.png Events - FDA Externally-Led Patient-Focused Drug Development Meeting - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/2024-stxbp1-summit monthly 0.5 2024-03-04 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/26dee8d2-3c86-47ea-b934-44d61bd414f6/StxGroup2-1-5_websize.jpg Events - 2024 STXBP1 Summit+ - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/park-city-epilepsy-meeting monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/c28c971d-4e46-4531-99cb-5f9d7e8d8247/Screenshot+2023-09-06+at+1.33.37+PM.png Events - Park City Epilepsy Meeting - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1e994958-e897-41f8-b556-a85cdd703cf5/Screenshot+2023-09-06+at+1.28.47+PM.png Events - Park City Epilepsy Meeting - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/starr-study-information-webinar-for-families monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/events/rare-across-america-congressional-events monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/e0b20cb6-ab83-44fc-8d79-4166c8a6385a/Rare.png Events - Rare Across America Congressional Events - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/1st-european-stxbp1-summit-and-research-roundtable monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4e5f78cb-341c-4313-a6ca-28375517d38e/Screenshot+2023-05-08+at+11.34.04+AM.png Events - 1st European STXBP1 Summit and Research Roundtable - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/american-epilepsy-society-annual-conference monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/11c0a31f-eb3e-4b12-948b-549955eac259/aes_logo.png Events - American Epilepsy Society Annual Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9110d681-9b40-4d5f-98e5-3715bf4614f1/Hop-Up+Banner_AES_2023_final.png Events - American Epilepsy Society Annual Conference - Make it stand out The STXBP1 Foundation’s booth graphics https://www.stxbp1disorders.org/events/stxbp1-disorders-awareness-month monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/events/the-million-dollar-bike-ride-for-orphan-disease-research monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/a31e286a-14d1-49e5-ba02-c37a050fc4e6/1M_Ride.jpg Events - The Million Dollar Bike Ride for Orphan Disease Research - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/rare-disease-day monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/653a2d25-570b-4f3d-89fe-574b96f08c7e/RareDiseaseDay.jpg Events - Rare Disease Day - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/survey-deadline-xcelerate-rare-challenge monthly 0.5 2024-02-07 https://www.stxbp1disorders.org/events/stxbp1-summit-2023 monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/01de3d8a-ac4d-4039-9c17-e440a657441c/CHCO.jpg Events - STXBP1 Summit + 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/events/giving-tuesday-fundraiser monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9302fab9-6833-4731-a0bd-ca389ff67357/STXBP1-Logo-White.jpg Events - 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Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/capsida-clinical-trial-information monthly 0.5 2025-02-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1658207253682-D2316C7CT55V6KMD3QOT/capsida-logo-600px.png Blog - Capsida Clinical Trial Information - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/bedankt-nl-thank-you-en monthly 0.5 2025-01-21 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/537c35e4-c869-41ff-8c0c-412cd9d4349e/M2C+Netherlands.jpg Blog - Bedankt (NL) / Thank You (EN) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/strides-in-stxbp1-research-december-2024 monthly 0.5 2025-01-10 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/f88bdd9d-d484-4bcc-af7a-3f13ae8fe28e/Dec+Research.png Blog - Strides in STXBP1 Research December 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/annualupdate2024 monthly 0.5 2025-12-15 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/d40e7409-42ee-4360-8405-a4be967aa9a6/Summit_All.jpg Blog - STXBP1 Community Activation: Reflections on 2024 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/2024-aes-summary monthly 0.5 2024-12-18 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1664819434647-O3CUOQ8UMMYFXO7C8754/aes_logo.png Blog - American Epilepsy Society 2024 Conference Recap - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/new-observational-study-on-seizure-or-seizure-like-movements-nownbsprecruiting monthly 0.5 2024-12-15 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/056ab03b-927b-4a0c-beeb-b3d746462479/Screenshot+2024-12-15+at+1.25.42%E2%80%AFPM.png Blog - New Observational Study on Seizure or Seizure-like Movements Now Recruiting - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/strides-in-stxbp1-what-happened-last-month-in-stxbp1-research-3 monthly 0.5 2024-12-18 https://www.stxbp1disorders.org/blog/strides-in-stxbp1-what-happened-last-month-in-stxbp1-research-2 monthly 0.5 2025-08-27 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1730915744443-3872XQX8LAJI4J0M3I1V/STX+Global+Research+%281%29.png Blog - Strides in STXBP1: What Happened Last Month in STXBP1 Research? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/9hs7gxur33m8oo9f6uq250mdzpz999 monthly 0.5 2024-10-20 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/d2d95013-33e2-4181-94bd-2982b7656bc3/Picture1.png Blog - Targeted Stabilization of Munc18-1 function via pharmacological chaperones - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/d711e3b3-d20e-4fa3-92d0-f3229d5e6d09/Picture2.png Blog - Targeted Stabilization of Munc18-1 function via pharmacological chaperones - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/aaffbf2c-a1c2-46c7-8859-dce60c8c0436/Picture3.png Blog - Targeted Stabilization of Munc18-1 function via pharmacological chaperones - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/ae7f573b-20c0-409f-8b7c-4d6b73bcccc9/Picture5.png Blog - Targeted Stabilization of Munc18-1 function via pharmacological chaperones - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/fe311329-4c5a-4f1b-8934-9a19173c01e6/Picture4.png Blog - Targeted Stabilization of Munc18-1 function via pharmacological chaperones - Make it stand out STXBP1 protein and its 3 locations where chaperones could bind. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/6b8fb65b-4e86-4ed8-925c-084ec1a0d977/Picture6.png Blog - Targeted Stabilization of Munc18-1 function via pharmacological chaperones - Make it stand out STXBP1 Missense Variants: G544D, R406H https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/90de6615-1985-4a68-b588-9475d319f9f9/Picture7.png Blog - Targeted Stabilization of Munc18-1 function via pharmacological chaperones - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/stxbp1-awareness-month-really-got-moving-in-germany monthly 0.5 2024-10-06 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9da7f97d-2ab9-4ecb-b995-79aa2f8f3931/balloons.png Blog - STXBP1 Awareness Month Really Got Moving in Germany - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1d40a22e-c261-4c9f-8b44-a1518ec1e3bd/Team+Jannek.jpeg Blog - STXBP1 Awareness Month Really Got Moving in Germany - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/260c1025-9a92-4ce2-bde3-47a4de4a1a20/launch.jpeg Blog - STXBP1 Awareness Month Really Got Moving in Germany - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/29e889e1-3478-4f49-9c2e-0ed090d4d29a/Thumb2.png Blog - STXBP1 Awareness Month Really Got Moving in Germany - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/ca75fd80-60b2-448c-aa35-5e61d10e68c1/huddle.jpeg Blog - STXBP1 Awareness Month Really Got Moving in Germany - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/strides-in-stxbp1-what-happened-last-month-in-stxbp1-research-1 monthly 0.5 2024-10-02 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/e12efa41-7a82-48dc-a7f4-1e81fa9b2916/Global+Research.png Blog - Strides in STXBP1: What Happened Last Month in STXBP1 Research? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/gene-therapy-approaches-for-stxbp1-related-disorders monthly 0.5 2024-10-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/2dab490b-1206-4a4c-af4d-ee6a1c51c707/Screenshot+2024-10-01+at+11.26.17%E2%80%AFAM.png Blog - Gene Therapy Approaches for STXBP1-Related Disorders - Make it stand out Watch this short video on our YouTube channel https://www.stxbp1disorders.org/blog/wccset6jd0s4r51y259iuzaubrn8p1 monthly 0.5 2024-09-09 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4c246128-214f-4e5a-976d-bc1f04ba6d59/CSH_Headshot.jpg Blog - An Interview with Dr. Connie Smith-Hicks, Director of the Center for Synaptic Disorders at the Kennedy Krieger Institute - Make it stand out Dr. Connie Smith-Hicks, Director https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4bed38ff-181f-4dd4-843d-6f119ffa460d/Screenshot+2024-09-09+at+11.16.57%E2%80%AFAM.png Blog - An Interview with Dr. Connie Smith-Hicks, Director of the Center for Synaptic Disorders at the Kennedy Krieger Institute - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/shelby-miller-helped-raise-awareness-during-mlbs-players-weekend monthly 0.5 2024-08-20 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/12bfe59b-fbe5-4dd3-8828-b248382b1807/Screenshot+2024-08-20+at+10.01.33%E2%80%AFAM.png Blog - Shelby Miller Helped Raise Awareness for STXBP1-Related Disorders during MLB’s Players Weekend - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/bcbb0c9a-de85-4001-864e-0f5819e12f82/Tigers.jpg Blog - Shelby Miller Helped Raise Awareness for STXBP1-Related Disorders during MLB’s Players Weekend - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/8e4f0cea-3292-4f8b-b874-97af6740f934/Screenshot+2024-08-20+at+10.02.13%E2%80%AFAM.png Blog - Shelby Miller Helped Raise Awareness for STXBP1-Related Disorders during MLB’s Players Weekend - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/188d2ca1-caef-4ff2-ac6c-645afde21f51/Screenshot+2024-08-20+at+10.00.05%E2%80%AFAM.png Blog - Shelby Miller Helped Raise Awareness for STXBP1-Related Disorders during MLB’s Players Weekend - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1724174603525-D13RQC2V9TLN7IO1MW7G/Miller2.png Blog - Shelby Miller Helped Raise Awareness for STXBP1-Related Disorders during MLB’s Players Weekend - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/impressions-of-the-2024-stxbp1-researcher-roundtable-meeting monthly 0.5 2024-08-10 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/a20324a4-69ed-4b01-9c99-7784e3bfaa0b/STXBP1_ResearchRoundtable_2_2024.jpg Blog - Impressions of the 2024 STXBP1 Researcher Roundtable Meeting - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/stxbp1-fast-forward-to-a-brighter-future monthly 0.5 2024-07-10 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/42ef2f98-4964-4720-98da-455caf92d722/Screenshot+2024-07-10+at+11.28.47%E2%80%AFAM.png Blog - STXBP1: Fast Forward to a Brighter Future - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/how-are-we-going-to-treat-stxbp1-disorders monthly 0.5 2024-07-10 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/f3fcd120-872b-4e1f-854d-ba75edb49a92/Screenshot+2024-07-10+at+11.03.31%E2%80%AFAM.png Blog - How Are We Going to Treat STXBP1 Disorders? - Make it stand out Watch accompanying video on YouTube https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/329691e2-d792-4d9b-a3f4-f21061b62a76/Synapse+small.png Blog - How Are We Going to Treat STXBP1 Disorders? - Make it stand out Figure 1. Illustration of a Synapse. Neurons communicate with one another via synapses. A presynaptic neuron communicates with a postsynaptic neuron by releasing neurotransmitters contained in structures called vesicles into the space between the two neurons known as they synaptic cleft. The neurotransmitters then ‘attach’ to neurotransmitter receptors on the postsynaptic neuron, resulting in a response from that neuron. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9047ad19-510e-42fe-b37d-c855c2b3b97e/Synapse+NT+release+small.png Blog - How Are We Going to Treat STXBP1 Disorders? - Make it stand out Figure 2. STXBP1 is Involved in Neurotransmitter Release. In order for neurotransmitters to be released into the synaptic cleft, the vesicles containing neurotransmitters inside the presynaptic neuron have to fuse with the neuron’s cell membrane. Several proteins are involved in this process including synaptobrevin, syntaxin, and SNAP-25. Syntaxin binding protein 1 (STXBP1) is important in allowing these proteins to connect together and pull the vesicle toward the cell membrane, thus allowing it to fuse. https://www.stxbp1disorders.org/blog/a-message-to-our-dads-from-our-own-dr-john-oldenhof monthly 0.5 2024-06-17 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/e5b52c65-8125-4536-b9af-3910b278b9b2/John+Oldenhof.png Blog - A Message to Our Dads from Our Own Dr John Oldenhof - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/an-overview-of-clinical-trials monthly 0.5 2025-06-04 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/fdc019a5-e657-443e-9100-2ebbb9fe0b1d/Screenshot+2024-05-20+at+5.03.27%E2%80%AFPM.png Blog - An Overview of Clinical Trials - Make it stand out Watch the accompanying video on our YouTube channel https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/185ddcdc-c59d-4928-9814-df54edf6dcc0/Clinical+Trial+Phases+v5.png Blog - An Overview of Clinical Trials - Make it stand out Figure 1. Phases of a Clinical Trial. Each phase of a clinical trial needs to have sufficient results that a drug is safe and has the potential to benefit patients before continuing to the subsequent phase. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/ebc61884-5dfc-4279-8534-0e98b39f05c8/Comparisons+of+clinical+trial+types+v2.png Blog - An Overview of Clinical Trials - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9b454698-3246-436c-b6e1-01975fd1c5c4/Inclusion+and+exclusion+v2.png Blog - An Overview of Clinical Trials - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/strides-in-stxbp1-what-happened-last-month-in-stxbp1-research monthly 0.5 2024-06-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1717703418946-OY9L4SKYD4DZKOO3FY2X/GlobalResearch.png Blog - Strides in STXBP1: What Happened Last Month in STXBP1 Research? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/41w9tz5k8nzo47bo5tpqgu4pdk6ywx monthly 0.5 2024-06-03 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/3a3019d0-1cea-4e12-b8ee-145144fccd1e/Conference.png Blog - American Society for Cell and Gene Therapy (ASCGT) conference recap by Mike Boland with Charlene Son Rigby - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/preclinical-studies-in-drug-development monthly 0.5 2024-05-24 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/fdc019a5-e657-443e-9100-2ebbb9fe0b1d/Screenshot+2024-05-20+at+5.03.27%E2%80%AFPM.png Blog - Preclinical Studies in Drug Development - Make it stand out Watch the accompanying video on our YouTube channel https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/14ecc0d8-12b6-47e9-ad98-47a4b3ae33bb/Drug+Discovery+small.png Blog - Preclinical Studies in Drug Development - Make it stand out Figure 1. Drug Development Process https://www.stxbp1disorders.org/blog/nbspan-introduction-to-gene-therapy monthly 0.5 2024-04-23 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/c73dfa05-6a16-4379-b5e5-576c4a4bea9f/Screenshot+2024-04-23+at+9.40.53%E2%80%AFAM.png Blog -  An Introduction to Gene Therapy - Make it stand out Watch the accompanying video on our YouTube channel https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/d9712edb-9edb-4d9b-97be-b4fbab623533/Gene+Replacement+small.png Blog -  An Introduction to Gene Therapy - Make it stand out Figure 1. Gene Replacement/Addition. A functional gene is added to a cell, often using virus-based vector delivery, in order to take over the function of a mutant gene or to express a protein that might be beneficial to the cell. In this type of gene therapy the added gene usually remains separate from the patient’s DNA. All figures adapted from: Prondzynski et al, Pflugers Archiv - European Journal of Physiology, 471:807. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/98101ab5-977e-4225-8101-1a27d028de99/Gene+Editing+small.png Blog -  An Introduction to Gene Therapy - Make it stand out Figure 2. Gene Editing Approach for Repairing a DNA Mutation. Gene editing is a gene therapy approach that interacts directly with the DNA present in the cell. One type of gene editing using a set of molecular tools known as CRISPR-Cas to repair DNA mutations, thus allowing a previously mutant gene to now make a normal functional protein. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/90e5d4bf-54ed-4ce0-91b0-b4435e18a49b/Cell+Therapy+small+alternative.png Blog -  An Introduction to Gene Therapy - Make it stand out Figure 3. Cell Therapy. Cell therapy is commonly performed by removing a patient’s cells, altering them by adding a therapeutic gene, and then transplanting them back into the patient. This type of therapy usually requires that the therapeutic gene be integrated, i.e. spliced, into the DNA of the patient’s cells. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/08555511-61b0-4cfc-910e-b8dfddd74199/RNA+Therapy+small.png Blog -  An Introduction to Gene Therapy - Make it stand out Figure 4. RNA Therapy. RNA Therapy is a gene therapy approach that either utilizes RNA as the therapeutic product or interacts with RNA in some way to induce a therapeutic effect. In this illustration, an antisense oligonucleotide (ASO) is delivered into a cell. The ASO ‘attaches’ to a specific RNA and allows that RNA to be used to make more protein than it normally would. https://www.stxbp1disorders.org/blog/rare-but-not-alone monthly 0.5 2024-03-11 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/006d8503-c270-4445-9915-fa91a674eb9e/Screenshot+2024-03-11+at+9.42.32%E2%80%AFAM.png Blog - Rare But Not Alone - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/61081a7d-9e6f-40e7-a9a1-93835b4b88bd/Rare_NIH.jpg Blog - Rare But Not Alone - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/see-the-rare-diseases-run-in-germany monthly 0.5 2024-03-06 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9fd17300-da02-4701-afc7-c4a0e20bd884/Rare_DE1.jpeg Blog - See the Rare Diseases Day 2024 Run in Germany - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1709747113800-8HJLEKZW305C9PTH1P6J/Rare_DE.jpeg Blog - See the Rare Diseases Day 2024 Run in Germany https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1709747117929-HAP89MMR255AF8KWHYLQ/Rare_DE2.jpg Blog - See the Rare Diseases Day 2024 Run in Germany https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1709747130574-CZXDIDJMRQQXN27SJAXN/Rare_DE3.jpeg Blog - See the Rare Diseases Day 2024 Run in Germany https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1709747131484-2E1V67CJ518CEZ2RNZGZ/Rare_DE4.jpeg Blog - See the Rare Diseases Day 2024 Run in Germany https://www.stxbp1disorders.org/blog/scientific-directors-corner-what-is-a-natural-history-study monthly 0.5 2024-03-06 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/d34758f2-605f-4eaa-bc1d-75fe367f556a/What+is+a+Natural+History+Study.png Blog - Scientific Director’s Corner: What is a Natural History Study? - Make it stand out Watch the accompanying video on our YouTube channel https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/22429f63-edaf-4088-a7cb-7c4dd227ceba/Natural+history+study+fig1.png Blog - Scientific Director’s Corner: What is a Natural History Study? - Make it stand out Figure 1. Conceptual framework for a natural history study. Adapted from Palmer et al, Neurotherapeutics,18:1432. https://www.stxbp1disorders.org/blog/were-represented-in-the-white-house-rare-disease-forum monthly 0.5 2024-03-06 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9f5eef75-e4c9-49a5-9376-557aa86b36bc/White+House+Panel.png Blog - We Were in the House … The White House - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/bc605862-a0a3-4b58-9480-b0c19c73065f/Rare+Disease+Forum+Social+Graphic.png Blog - We Were in the House … The White House - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/scientific-directors-post-genes-are-the-blueprints-for-making-proteins monthly 0.5 2025-05-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9285b2a1-c41a-4fcc-a6ea-741427aeb9ef/Structures+of+nucleotides+and+sugars.png Blog - 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Therapy Approaches for STXBP1 Disorder - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.stxbp1disorders.org/blog/chemical-chaperones-for-stxbp1-hgycs monthly 0.5 2024-02-07 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/b62ba5e7-2a47-4ec4-b574-069d87e5fd2c/folding_without_chaperone.png Blog - What Are Pharmacological Chaperones? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/0fa6687e-56cd-4c8a-842a-9981fcf2101c/folding_with_chaperone.png Blog - What Are Pharmacological Chaperones? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1e30ea0b-9c83-4ff7-a84e-a7bc88996c15/In_Three.png Blog - What Are Pharmacological Chaperones? https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/0d81e661-03ed-4f4b-a0b8-894cb1518a8d/STXBP1_3domains.png Blog - What Are Pharmacological Chaperones? - Make it stand out STXBP1 protein and its 3 locations where chaperones could bind. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/e6dad678-8a82-4a39-827b-d0f83a97ce69/9.png Blog - What Are Pharmacological Chaperones? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/7725658a-ef76-4637-a96e-42078fe40dbe/10.png Blog - What Are Pharmacological Chaperones? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/4a2706b1-68b8-4b07-a645-b9de88ebc8b0/13.png Blog - What Are Pharmacological Chaperones? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/0990a578-71b2-4ed7-98f3-c431863f12bf/9.png Blog - 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A Look Into Biomarkers and How They Could Be Applied to STXBP1 - Make it stand out Categories of Biomarkers https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/678ca5a6-33ed-43e9-97fe-70d12b322556/Examples+of+biomarkers2.png Blog - A Look Into Biomarkers and How They Could Be Applied to STXBP1 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/c4985905-0fe0-4cb0-8cd8-1982b8759cd0/EEG+biomarker.png Blog - A Look Into Biomarkers and How They Could Be Applied to STXBP1 - Make it stand out EEGs from STXBP1 children appear to show a greater inhibitory tone as demonstrated by a decrease in excitatory/inhibitory balance (fE/I). 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https://www.stxbp1disorders.org/blog/tag/genetic+disorder monthly 0.5 https://www.stxbp1disorders.org/blog/tag/STXBP1 monthly 0.5 https://www.stxbp1disorders.org/blog/tag/COVID-19+message monthly 0.5 https://www.stxbp1disorders.org/blog/tag/EPILEPSY monthly 0.5 https://www.stxbp1disorders.org/blog/tag/Scientific+Conference+and+Family+Meeting monthly 0.5 https://www.stxbp1disorders.org/blog/tag/ePILEPSY+AWARENESS monthly 0.5 https://www.stxbp1disorders.org/about daily 0.75 2026-02-16 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/45f6754d-fca6-491f-8f40-d292adfecba8/Three+Year+Plan.jpg https://www.stxbp1disorders.org/what-is-stxbp1 daily 0.75 2026-03-02 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1576909123474-IVJD3OW59EPFFUEOZ6WB/stxbp1.jpg https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/b568bb50-c67b-4d50-82a5-5b1002f948bb/Site+graphic+Newly+Diagnosed.png https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/8f5a033f-f682-489c-805e-006033d7de24/Xian_Figure1_VariantSpectrum.jpg https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1579554153358-74KDWKNT6E0LSHOZGYGL/STXBP1_PrimesVesicle_SuriEtAl.png https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1612814116922-M0A3A7LUR2FW53LILX7U/Glossary.jpg https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1576909123474-IVJD3OW59EPFFUEOZ6WB/stxbp1.jpg What is STXBP1? https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/8f5a033f-f682-489c-805e-006033d7de24/Xian_Figure1_VariantSpectrum.jpg What is STXBP1? https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1579554153358-74KDWKNT6E0LSHOZGYGL/STXBP1_PrimesVesicle_SuriEtAl.png What is STXBP1? https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1612814116922-M0A3A7LUR2FW53LILX7U/Glossary.jpg What is STXBP1? 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https://www.stxbp1disorders.org/2022-summit-countdown daily 0.75 2024-04-14 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/42b56e17-3efd-4bd9-b5b2-6f3f50be4fb7/170.jpg 2022 Summit + - Make it stand out Keep smiling with our Georgia in our Summit+ Photo Gallery https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/cbacd2c8-6c99-40e8-bee1-a0a7c03db629/At+a+Glance.png 2022 Summit + - Make it stand out At a Glance View https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1660666756055-PKOEGS6KWBU29FXTH757/Web+Banner_REV.png 2022 Summit + - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/42b56e17-3efd-4bd9-b5b2-6f3f50be4fb7/170.jpg https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/cbacd2c8-6c99-40e8-bee1-a0a7c03db629/At+a+Glance.png 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https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9843bde8-a10f-482e-96bf-e5fae1d4d516/research+resources+tiny.png Researcher Resources - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/b60485a7-bfff-4386-8b4b-5e5cf7706a37/journals+tiny.png Researcher Resources - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/3a021ad2-40d5-4839-9adc-b3cecd28e5ad/Scientist.png https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/9843bde8-a10f-482e-96bf-e5fae1d4d516/research+resources+tiny.png https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/3706ac89-6c13-47c4-b0c9-50a52ce5e87a/combinedbrainlogo.png 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Individuals reported with STXBP1-related disorders and associated phenotypic features across subgroups. (A) Distribution of phenotypic features in the overall cohort of 534 individuals. Radial lines indicate frequency of terms in the respective cohort. (B) Individuals were grouped into broad phenotypic groups. (C) Distribution of phenotypic features across subgroups. Taken from (8). https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/94d5084e-33b0-4cef-8455-061d5b0d7d2a/Overview+summary+fig+2.png Overview of STXBP1 Disorders - Make it stand out Figure 2. Overview of STXBP1 variants. (A) Recurrent STXBP1 variants found in five or more individuals. (B) The STXBP1 protein (top) and gene (bottom), highlighting a selection of recurrent variant hotspots. The proportion of STXBP1 disorder-associated versus population variants is shown below, highlighting (grey) regions in which the difference is significant. (C) Distribution of variant types. Splice site, frameshift variants and whole and partial gene deletions were included in the PTV/del group. Taken from (8). https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/95d35eb0-2f24-4441-b4b2-cdb4f8905ffb/Overview+summary+figure+1.png Overview of STXBP1 Disorders - Make it stand out Figure 1. Individuals reported with STXBP1-related disorders and associated phenotypic features across subgroups. (A) Distribution of phenotypic features in the overall cohort of 534 individuals. Radial lines indicate frequency of terms in the respective cohort. (B) Individuals were grouped into broad phenotypic groups. (C) Distribution of phenotypic features across subgroups. Taken from (8). https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/94d5084e-33b0-4cef-8455-061d5b0d7d2a/Overview+summary+fig+2.png Overview of STXBP1 Disorders - Make it stand out Figure 2. Overview of STXBP1 variants. (A) Recurrent STXBP1 variants found in five or more individuals. (B) The STXBP1 protein (top) and gene (bottom), highlighting a selection of recurrent variant hotspots. The proportion of STXBP1 disorder-associated versus population variants is shown below, highlighting (grey) regions in which the difference is significant. (C) Distribution of variant types. Splice site, frameshift variants and whole and partial gene deletions were included in the PTV/del group. Taken from (8). https://www.stxbp1disorders.org/scientific-director daily 0.75 2026-03-05 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1710183310045-BA9CR4EYM7OCD8ZVQXOU/Screenshot+2024-03-11+at+11.54.47%E2%80%AFAM.png https://www.stxbp1disorders.org/summit-agenda daily 0.75 2022-08-18 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1659128252197-DA1X1V63DBOYJPUNA7ZH/Screen+Shot+2022-07-29+at+10.40.40+AM.png 2022 STXBP1 Summit+ Agendas - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/6b6df133-0776-45ea-8766-7f078a43d94a/Shhhh.png 2022 STXBP1 Summit+ Agendas - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1658545912901-0N1U9G1GLKJ2BRK3594T/STXBP1+Summit%2B+2022+Family+Meeting+Agenda1024_1.jpg 2022 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https://www.stxbp1disorders.org/2022-stxbp1-summit-recordings daily 0.75 2024-07-14 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/2047afff-f2aa-4037-bac4-68abd474f8ac/Researchers.jpg 2022 STXBP1 Summit+ Recordings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/809d280d-4d26-484e-a3b2-8d8feec7f9ba/Charlene.jpg 2022 STXBP1 Summit+ Recordings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/dbb2580c-e1d5-4051-8d2a-cd3a3430028a/Family+Day.jpg 2022 STXBP1 Summit+ Recordings - Make it stand out Watch the entire Family Meeting all at once from start to finish in our Livestream recording https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/2047afff-f2aa-4037-bac4-68abd474f8ac/Researchers.jpg 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https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/24d2d40f-4108-4647-bd88-1c400e87c5e5/Clinical+Trial+Icon+small.png https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/1722885715389-TO9XG2BKX11SYZ12CZ6O/Get+Ready+Banner.png https://www.stxbp1disorders.org/applyforagrant daily 0.75 2024-10-01 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/ab51429e-60e6-4656-9011-07cc5e238d55/papers+and+pen+small.png STXBP1 Foundation Grants Program - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/ab51429e-60e6-4656-9011-07cc5e238d55/papers+and+pen+small.png https://www.stxbp1disorders.org/all-in daily 0.75 2022-11-05 https://images.squarespace-cdn.com/content/v1/5dfbd743194e190a44c01ec8/834744af-bee8-453f-a06f-03a558ab3b62/20_percent.png All In - Make it stand out Whatever it is, the way you tell your story online can 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