Programs

  • Program 1 [2020]

    LGSF FUNDS RESEARCH FOR BETTER TREATMENTS AND CURES FOR LGS AND LGS-RELATED EPILEPSIES BY AWARDING RESEARCH GRANTS TO QUALIFIED SCIENTISTS AND CLINICIANS. THESE GRANTS FUND INITIAL RESEARCH HYPOTHESES THAT HAVE NOT BEEN FULLY EXPLORED. THE RESULTS EXTRACTED FROM THIS TYPE OF RESEARCH WILL HELP BRING UNTESTED RESEARCH TO THE POINT THAT IT MAY QUALIFY FOR LARGER GOVERNMENTAL FUNDING. SINCE 2013, LGS HAS AWARDED OVER HALF A MILLION DOLLARS TO 13 RESEARCH ENDEAVORS AND EFFORTS ARE RAMPING UP STARTING IN 2020 TO INCREASE THIS DRAMATICALLY. RESEARCH AREAS INCLUDE DEATH IN LGS, SUDEP, UNDERSTANDING WHERE THE ELECTROGRAPHIC FEATURES OF LGS ORIGINATE IN THE BRAIN, DRUG DISCOVERY, DRUG SCREENING, TREATMENTS, GENETICS, EPIDEMIOLOGY, AND NEURAL NETWORKS. IN 2020, LGSF BROUGHT ON A NEW EXECUTIVE DIRECTOR (ED) THAT ALSO HAS A PH.D. IN NEUROSCIENCE. THE ED SERVES AS A PEER BETWEEN THE PATIENT, SCIENTIFIC/MEDICAL COMMUNITY, DEVELOPS STRATEGIES TO FIND THE CURES, PREPARES ORIGINAL MANUSCRIPTS, AND HELPS CATALYZE AND SYNERGIES EFFORTS BETWEEN PATIENTS, FAMILIES, FOUNDATIONS, THE NIH, FDA, PHARMA, AND BIOTECH.
    Geographies
    Not indicated
    Dates
    Jan 1, 2020 – Dec 31, 2020
    Source
    990
    No causes provided
    No populations provided
    –
    $241.4K

  • Program 2 [2020]

    RECEIVING A DIAGNOSIS OF LGS IS OVERWHELMING AND LEAVES FAMILIES WITH MANY UNANSWERED QUESTIONS. LGSF PROVIDES PATIENT NAVIGATOR AND FAMILY SUPPORT TO ALL LIVING WITH LGS SO THAT NOBODY HAS TO WALK THE JOURNEY ALONE. WE HOST A BIENNIAL PROFESSIONAL AND FAMILY CONFERENCE DESIGNED TO UNITE THE COMMUNITY OF PATIENTS, FAMILIES, CAREGIVERS, RESEARCHERS, CLINICIANS, AND OTHER PROFESSIONALS. OUR 2020 VIRTUAL CONFERENCE BROUGHT TOGETHER MORE THAN 420 FAMILIES FROM AROUND THE WORLD FOR THIS 3-DAY EVENT. THE PURPOSE OF THE CONFERENCE IS TO BRING THE LATEST MEDICAL AND SCIENTIFIC INFORMATION TO FAMILIES LIVING WITH LGS AND TO HEAR FROM PATIENT FAMILY EXPERTS AS THEY ADVISE PROFESSIONALS AS TO WHAT MATTERS MOST TO THEM IN THEIR DAILY LIVES.
    Geographies
    Not indicated
    Dates
    Jan 1, 2020 – Dec 31, 2020
    Source
    990
    No causes provided
    No populations provided
    –
    $34.5K

  • Program 3 [2020]

    LGSF PRODUCES AN ANNUAL RESEARCH ROUNDTABLE MEETING TO PROVIDE RESEARCHERS AND CLINICIANS THE OPPORTUNITY TO COLLABORATE AND BETTER DISCUSS RESEARCH AND TREATMENT OPTIONS FOR LGS AND TO DESIGN OUR ROADMAP TOWARDS THE CURES. THE LGS RESEARCH ROUNDTABLE DRAWS IN MORE THAN 100 PARTICIPANTS AND ADDRESSES UNMET NEEDS IN RESEARCH, MEDICAL CARE, HEALTHCARE PROVIDER EDUCATION, AND MORE.
    Geographies
    Not indicated
    Dates
    Jan 1, 2020 – Dec 31, 2020
    Source
    990
    No causes provided
    No populations provided
    –
    $0