• The Journey of Susannah’s Personalized ASO

  • May 6 2025
  • Durée: 46 min
  • Podcast

The Journey of Susannah’s Personalized ASO

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  • Résumé

  • When Luke Rosen's daughter was diagnosed with KIF1A—a rare, progressive neurological disorder—he didn't wait for answers. He and his wife built a community, launched a nonprofit, and became a driving force in rare disease research. In this episode, Luke shares how patient-led science accelerates treatments and reshapes what’s possible for families like his.

    Show Notes 

    Sounds of Science - N=1 Episode
    Charles River | Rare Disease

    Charles River | Rare Disease for Drug Discovery

    Charles River | ASO Screening Services
    Personalized ASO Provides Improvement for a Girl with KAND< an Ultra-rare Disease

    SCA3: A Family Affair

    Susannah's Superhero Story

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