Programs

  • Barth Syndrome Research Program

    THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2021 WAS COMPRISED OF A) THE BSF RESEARCH PROGRAM TO FOSTER SCIENTIFIC AND CLINICAL INVESTIGATIONS INTO BARTH SYNDROME TO FACILITATE THE DEVELOPMENT OF A SPECIFIC TREATMENT OR A CURE FOR THIS DISEASE, AND B)THE BARTH SYNDROME MEDICAL DATABASE AND BIO-REPOSITORY FOR THE COLLECTION AND STORAGE OF MEDICAL INFORMATION/SAMPLES ON INDIVIDUALS WITH BARTH SYNDROME OVER TIME TO GAIN A BETTER UNDERSTANDING OF THE DISEASE.
    Geographies
    Not indicated
    Dates
    Jan 1, 2022 – Dec 31, 2022
    Source
    990
    No causes provided
    No populations provided
    –
    $466.5K

  • Barth Syndrome International Conference

    THE BARTH SYNDROME INTERNATIONAL SCIENTIFIC, MEDICAL AND FAMILY CONFERENCE IS GENERALLY HELD EVERY TWO YEARS. THE CONFERENCE BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGETHER IN ONE PLACE AT A TIME SO THAT THEY MAY COLLABORATE AND SHARE THEIR KNOWLEDGE TO GAIN A GREATER UNDERSTANDING OF BARTH SYNDROME AND LEARN ABOUT THE LATEST DISCOVERIES AND SCIENTIFIC RESEARCH AVAILABLE. FAMILIES HAVE A UNIQUE OPPORTUNITY TO BE SEEN BY THE WORLD'S GREATEST EXPERTS, THEREBY CONTRIBUTING DIRECTLY TO THE SEARCH FOR A CURE BY PRODIVING INFORMATION AND TISSUE SAMPLES. (WHILE NOT HELD IN 2021 DUE TO COVID-19, THE CONFERENCE CONTINUES TO BE A KEY PILLAR.)
    Geographies
    Not indicated
    Dates
    Jan 1, 2022 – Dec 31, 2022
    Source
    990
    No causes provided
    No populations provided
    –
    $65.9K

  • The Will McCurdy Fund for the Advancement of Therapies for Barth Syndrome

    THE WILL MCCURDY FUND FOR THE ADVANCEMENT OF THERAPIES FOR BARTH SYNDROME WILL BE USED EXCLUSIVELY FOR THE DEVELOPMENT OF THERAPIES DESIGNED TO PREVENT, ALLEVIATE, OR ELIMINATE THE SYMPTOMS OF BARTH SYNDROME.
    Geographies
    Not indicated
    Dates
    Jan 1, 2022 – Dec 31, 2022
    Source
    990
    No causes provided
    No populations provided
    –
    $182.4K