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Press Releases

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23 Oct, 2025

    Rarest in the Family: Juliette (MPS III)

    When Jemma and Joey met as college students at Kansas State University, they could never have imagined how...

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    12 May, 2025

      The Princess of the Family: Sebin’s Story

      Sebin, the third of four siblings, has spent nearly her entire life in the hospital, including time in the...

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      15 Apr, 2025

      National MPS Society Applauds Renewed Progress for TA-ERT (MPS IIIB) Program Under Spruce Biosciences Leadership

      Durham, NC — April 15, 2025 — The National MPS Society welcomes the news that Spruce Biosciences is now...

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      26 Mar, 2025

        The Invaluable Gift of Hope: Raelin’s Story

        "In 2018, our family welcomed our youngest daughter, Raelin, into the world. From the moment she was born,...

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        27 Jan, 2025

          A Mother’s Relentless Fight: Jacob’s Journey with MPS IIIB

          For most of his 10 years, Jacob has been a puzzle. Born prematurely, he faced challenges from the start....

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          15 Oct, 2024

          Fanny’s Journey with MPS IV A

          "I was born with a rare disease without even knowing it," explains Fanny Z., a 14-year member of the Society...

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          4 Oct, 2024

          Lucas’s Legacy

          Lucas was the youngest of four children. From the start, he stood out—not just as the baby of the family, but...

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          24 Jul, 2024

          Update on Allievex and AX 250

           An Update on Allievex  Dearest Sanfilippo Community Members and Allies, It is with deep...

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