Programs

  • Snyder-Robinson Syndrome Research Study

    Snyder-Robinson Syndrome Patient Registry and Natural History Study (ongoing): This IRB-approved study gathers medical data from SRS patients to help researchers to understand SRS and to develop treatments for SRS. This includes salary expense for our Director of Research and related expenses (i.e., payroll taxes and payroll service).
    Geographies
    Not indicated
    Dates
    Apr 1, 2021 – Mar 31, 2022
    Source
    990
    No causes provided
    No populations provided
    –
    $57.8K

  • SRS Education and Outreach

    Education/Website: We incurred $9064 in expenses to maintain a website and create digital content to share information about SRS, including information for health care providers. This includes expense incurred to translate health care information into 12 languages spoken by families of individuals with SRS. Our website may be found at www.snyder-robinson.org.
    Geographies
    Not indicated
    Dates
    Apr 1, 2021 – Mar 31, 2022
    Source
    990
    No causes provided
    No populations provided
    –
    $56.6K

  • SRS Research Collaboration

    RESEARCH: We incurred expenses of $30,000 for a project with researchers at Johns Hopkins University to explore potential treatments for SRS. We also incurred expenses of $20,396 for phenotyping of SRS mouse models in order to conduct preclinical testing of potential treatment for SRS for safety and efficacy.
    Geographies
    Not indicated
    Dates
    Apr 1, 2021 – Mar 31, 2022
    Source
    990
    No causes provided
    No populations provided
    –
    $50.4K