Programs

  • Research for SPATA5 Disorders

    Our primary focus is research for SPATA5 and SPATA5L1 disorders. Our primary focus of 2024 was a drug repurposing study with Unravel Biosciences. This project, once completed, will benefit all approximately 150 world wide diagnosed with these disorders.
    Geographies
    Not indicated
    Dates
    Jan 1, 2024 – Dec 31, 2024
    Source
    990
    No causes provided
    No populations provided
    –
    $42.2K

  • Fundraising for Research and Education

    Our second largest focus is fundraising which is essential to funding important research and education. Fundraising expenses include materials for events and payouts for winners of fundraising events. All funds raised will go towards efforts to help those affected by these disorders.
    Geographies
    Not indicated
    Dates
    Jan 1, 2024 – Dec 31, 2024
    Source
    990
    No causes provided
    No populations provided
    –
    $970

  • Education on Rare Disorders

    Our third largest expense is education. We have to educate people about these disorders because they are so rare. This includes printed materials like flyers and brochures and website expenses.
    Geographies
    Not indicated
    Dates
    Jan 1, 2024 – Dec 31, 2024
    Source
    990
    No causes provided
    No populations provided
    –
    $1.1K