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Press Releases

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22 Sep, 2025

    A Long Road: Kelley’s Journey to an MPS I Diagnosis

    Kelley grew up in Jersey City, where her childhood was shaped by both anxiety and resilience. She remembers...

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    17 Mar, 2025

      The Wain Family’s Journey

      The Wain family’s journey with MPS began in 1987 when their firstborn, Matthew, was diagnosed with MPS I....

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      12 Dec, 2024

      In Loving Memory: Eddie Bell Jr.

      Eddie James Bell Jr. was born on July 29, 1981, and brought love and light to all who knew him until his...

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      7 Nov, 2024

      Researcher and Advocate: Dr. Kakkis

      In the early days of his career, a young scientist named Emil Kakkis found himself deep in the world of...

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      11 Sep, 2024

      Benji: Strong, Confident, and Self-Assured

      Benji C. is a strong, confident, self-assured, loud, and determined 8-year-old with MPS I. When Benji was...

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      22 Sep, 2022

      Newborn Screening Article Release

      Matthew Ellinwood, Chief Scientific Officer, authored a new publication published in the American Journal of...

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