Programs

  • Program 1 [2020]

    RESEARCH GRANTS - THE FOUNDATION MAKES GRANTS TO RESEARCHERS INTERESTED IN RYR-1 MYOPATHY. AS THE ONLY ORGANIZATION SOLELY DEDICATED TO RYR-1 MYOPATHY, WE PROMOTE RESEARCH IN THIS AREA.
    Geographies
    Not indicated
    Dates
    Jan 1, 2020 – Dec 31, 2020
    Source
    990
    No causes provided
    No populations provided
    –
    $193.9K

  • Program 2 [2020]

    CLINICAL CARE GUIDELINES: WHAT PATIENTS & FAMILIES NEED TO KNOW ABOUT RYR-1-RELATED DISEASES - THE RYR-1 FOUNDATION PUBLISHED THE CLINICAL CARE GUIDELINES (CCG) IN FALL 2020. THIS HANDBOOK, MADE POSSIBLE BY A $50,000 GRANT FROM THE OSCAR AND ELSA MAYER FAMILY FOUNDATION, WAS WRITTEN EXCLUSIVELY FOR INDIVIDUALS AND FAMILIES AFFECTED BY RYR-1-RELATED DISEASES. THE CCG HAS NOW BEEN PUBLISHED BY THE RYR-1 FOUNDATION IN THE FOLLOWING LANGUAGES: ARABIC, CHINESE (SIMPLIFIED), ENGLISH, FRENCH, GERMAN, RUSSIAN, SPANISH, AND VIETNAMESE. WE CONSIDER THE RYR-1 FOUNDATION TO BE AN INTERNATIONAL ORGANIZATION WITH A MISSION TO HELP ALL AFFECTED INDIVIDUALS AND FAMILIES, ESPECIALLY THOSE IN UNDERSERVED COMMUNITIES. AS FUNDS BECOME AVAILABLE, WE LOOK FORWARD TO TRANSLATING THE CCG INTO ADDITIONAL LANGUAGES.
    Geographies
    Not indicated
    Dates
    Jan 1, 2020 – Dec 31, 2020
    Source
    990
    No causes provided
    No populations provided
    –
    $34.6K

  • Program 3 [2020]

    PATIENT OUTREACH AND EDUCATION - THE FOUNDATION RAISES AWARENESS THROUGH RESOURCES ON ITS WEBSITE, INCLUDING THE LATEST MEDICAL LITERATURE, AS WELL AS DIRECT MEETINGS WITH PHYSICIANS AROUND THE WORLD. THE FOUNDATION SERVES AS A RESOURCE FOR PATIENTS AND THEIR FAMILIES THROUGH ITS WEBSITE, OTHER FORMS OF SOCIAL MEDIA, AND FAMILY CONFERENCES.
    Geographies
    Not indicated
    Dates
    Jan 1, 2020 – Dec 31, 2020
    Source
    990
    No causes provided
    No populations provided
    –
    $14.8K