Programs

  • PWS Family Support Program

    FAMILY SUPPORT: PWSA/USAS FAMILY SUPPORT TEAM PROVIDES INDIVIDUALS DIAGNOSED WITH PRADER-WILLI SYNDROME, THEIR FAMILIERS, AND CARE PROVIDERS WITH CRITICAL INFORMATION AND RESOURCES ON PWS. WE ALSO PROVIDE EDUCATION TO MEDICAL PROVIDERS, SCHOOLS, AND PROFESSIONAL CARE GIVERS THROUGH ONGOING TRAINING, TOOLKITS AND OTHER VALUABLE RESOURCES. WE SUPPORT THE FAMILY FROM NICU THROUGH ALL STAGES OF THE PWS JOURNEY. IN 2024, PWSAS FAMILY SUPPORT TEAM RESPONDED TO 4,043 FAMILY SUPPORT INQUIRES PROVIDING SUPPORT TO FAMILIES IN ALL 50 U.S. STATES AND 20 COUNTRIES. IN 2024, THERE WERE 24 TRAININGS TO HOSPITALS, SCHOOLS, LAW ENFORCEMENT AND RESIDENTIAL GROUP HOMES. WE HOSTED OUR FIRST EVER RESIDENTAL PROVIDERS CONFERENCE TO PROVIDE LECTURES/WORKSHOPS TO MORE THAN 100 PROFESSIONALS AROUND THE COUNTRY. THROUGH GENEROUS DONATIONS WE ASSEMBLED AND MAILED NEW DIAGNOSIS KITS AND CARE PAGES WITH PACKET OF HOPE RESOURCE GUIDE FOR NEW PWS FAMILIES. IN ADDITION, WE HAVE FREE FAMILY SUPPORT WEBINAR SERIES FOR FAMILIES AND PROVIDERS.
    Geographies
    Not indicated
    Dates
    Jan 1, 2024 – Dec 31, 2024
    Source
    990
    No causes provided
    No populations provided
    –
    $668.1K

  • Advocacy and Awareness for PWS

    ADVOCACY AND AWARENESS: INCREASING AWARENESS AND EFFECTIVELY ADVOCATING FOR PRADER-WILLI SYNDROME AT THE STATE AND FEDERAL LEVEL IS A CRITICAL COMPONENT OF OUR MISSION. WE SEEK TO INVOLVE ALL MEMBERS OF OUR COMMUNITY AND WORK TO KEEP YOU INFORMED ON THE BEST WAYS TO AFFECT CHANGE FOR OUR LOVED ONES. IN 2024, PWSA CONDUCTED A DC FLY-IN DRAWING 147 ADVOCATES REPRESENTING 31 STATES. ADVOCATES ATTENDED A REMARKABLE 131 CONGRESSIONAL MEETINGS TO ENGAGE IN DISCUSSION AND BE A VOICE FOR THOSE AFFECTED BY PRADER-WILLI SYNDROME.
    Geographies
    Not indicated
    Dates
    Jan 1, 2024 – Dec 31, 2024
    Source
    990
    No causes provided
    No populations provided
    –
    $438.5K

  • PWS Research Support Program

    RESEARCH: PWSA/USA SEEKS TO SUPPORT RESEARCH PROJECTS WITH THE POTENTIAL FOR IMMEDIATE AND HIGH IMPACT FOR THE PWS COMMUNITY. THE GOAL IS TO FAST-TRACK BETTER TREATMENT FOR THE SYNDROME, AND WE PROUDLY COLLABORATE WITH PARTNERS REPRESENTING PHARMACEUTICAL COMPANIES, RESEARCH UNIVERSITIES, AND MORE TO ACHIEVE THAT GOAL. PWSA USAS CLINICAL AND SCIENTIFIC ADVISORY BOARD (CSAB) DEDICATE THOUSANDS OF HOURS TO ENHANCE RESEARCH, WRITE EDUCATIONAL MATERIALS AND PROVIDE CONSULTATION TO UNDERSTANDING AND TREATING PWS. IN 2024, MULTIPLE PHASE 3 TRIALS BEGAN TO BRING NEW HOPE TO THE COMMUNITY. SEVERAL YEARS OF ADVOCACY AND RESEARCH EFFORTS HELPED PAVE WAY TO THE FIRST FDA APPROVED TREATMENT FOR HYPERPHAGIA.
    Geographies
    Not indicated
    Dates
    Jan 1, 2024 – Dec 31, 2024
    Source
    990
    No causes provided
    No populations provided
    –
    $51.2K