Mark Quinlan 9/30/26 Mark Quinlan 9/30/26

STARR Will Continue Through June 2028: Why the Additional Time Matters  

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Mark Quinlan 9/15/26 Mark Quinlan 9/15/26

The Global STXBP1 Caregiver Survey is Live!

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Mark Quinlan 9/1/26 Mark Quinlan 9/1/26

New STXBP1 Caregiver Survey to Help Advance Clinical Trial Readiness

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Russ Novy 5/11/26 Russ Novy 5/11/26

Community Update – Capsida Clinical Trial

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Russ Novy 3/31/26 Russ Novy 3/31/26

Chords for Callum: Jon Stickley to lead powerhouse fundraising concert

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Russ Novy 2/23/26 Russ Novy 2/23/26

Building a Rare Disease Ecosystem with Rafa’s Moonshot

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Russ Novy 1/8/26 Russ Novy 1/8/26

Community Update – Capsida Clinical Trial

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Russ Novy 12/22/25 Russ Novy 12/22/25

Rare development disorder hasn’t kept Wellesley swimmer from varsity

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Russ Novy 11/5/25 Russ Novy 11/5/25

STXBP1 Foundation Expands STARR Natural History Study with New Site at Rush University Medical Center

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Russ Novy 10/28/25 Russ Novy 10/28/25

STXBP1 Foundation Awards Innovation Grant to Helen Willsey for Gene Therapy Development

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