Russ Novy 3/28/25 Russ Novy 3/28/25

Small Town. Loud Voice.

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Russ Novy 2/5/25 Russ Novy 2/5/25

What happens when a rare disease drug seems to work, but the health care system doesn’t?

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Russ Novy 2/1/25 Russ Novy 2/1/25

Orphan Disease Center 2024 Million Dollar Bike Ride Grants - $139,416 for STXBP1 Research Awarded

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Russ Novy 1/15/25 Russ Novy 1/15/25

STXBP1 Foundation Accelerates Growth with Addition of New Executive Director

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Russ Novy 11/1/24 Russ Novy 11/1/24

FDA Grants Orphan Drug Designation to Capsida Biotherapeutics for Potential Treatment of STXBP1 Developmental and Epileptic Encephalopathy

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Russ Novy 10/15/24 Russ Novy 10/15/24

Advancing Toward Gene Therapies for Rare Epilepsies

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Russ Novy 10/2/24 Russ Novy 10/2/24

Newly Published “Voice of the Patient Report”

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Russ Novy 9/19/24 Russ Novy 9/19/24

Six patient advocacy groups collaborate to co-fund a single-center observational study of seizure types in rare genetic epilepsies

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Russ Novy 8/20/24 Russ Novy 8/20/24

NPR Stateside Podcast: One family's fight to find a cure for daughter's rare genetic disorder

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Russ Novy 7/30/24 Russ Novy 7/30/24

Glowing reviews for STXBP1-Related Disorders Research

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