Programs

  • Gene Therapy Research Acceleration

    Gene Therapy Research Acceleration: Funded multiple academic research programs aimed at advancing AAV9 gene therapy for SPG4, including Drexel University (Baas Lab / Cyagen mouse model), Boston Childrens Hospital (DEF Lab), University of Massachusetts, and University Of Wisconsin.
    Geographies
    Not indicated
    Dates
    Jan 1, 2024 – Dec 31, 2024
    Source
    990
    No causes provided
    No populations provided
    –
    $199.1K

  • Community Awareness and Engagement

    Awareness and Community Engagement: Mobilized families, hosted awareness campaigns, and led community events (golf fundraiser, 5K, year-end campaign) to raise funds for SPG4 research and increase public engagement.
    Geographies
    Not indicated
    Dates
    Jan 1, 2024 – Dec 31, 2024
    Source
    990
    No causes provided
    No populations provided
    –
    –

  • Patient and Family Support Services

    Patient and Family Support: Provided educational resources, coordinated family meetings, and built collaborations to education and bring together the SPG4 community.
    Geographies
    Not indicated
    Dates
    Jan 1, 2024 – Dec 31, 2024
    Source
    990
    No causes provided
    No populations provided
    –
    –