Lgs Foundation

TO IMPROVE THE LIVES OF THOSE IMPACTED BY LGS THROUGH ADVANCING RESEARCH, AWARENESS, EDUCATION, AND FAMILY SUPPORT.

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 ONLINE COMMUNITY GREW TO 7,000 MEMBERS IN 2021 AND WE HAVE 59 AMBASSADORS IN 7 COUNTRIES WHO HELP LOCAL FAMILIES NAVIGATE THE LGS JOURNEY. IN 2021, OVER 760 NEW MEMBERS JOINED THE LGS FOUNDATION AND OVER 400 NEW FAMILY WELCOME KITS WERE MAILED TO GET FAMILIES STARTED ON THEIR LGS JOURNEY. WE ALSO SUPPORTED OVER 100 BEREAVED FAMILIES WHO HAVE LOST THEIR LOVED ONE TO LGS. FURTHER, WE HAVE FUNDED OVER $100,000 IN PATIENT ASSISTANCE SINCE OUR INCEPTION. THIS PROGRAM CONTINUES TO GROW AS WE FOCUS ON SUPPORTING OUR FAMILIES BOTH GLOBALLY AND LOCALLY.

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 NEARLY A MILLION DOLLARS TO 15 RESEARCHERS AND EFFORTS HAVE RAMPED UP TO INCREASE THIS DRAMATICALLY OVER THE NEXT 5 YEARS. 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 2021, LGSF BROUGHT TOGETHER NEARLY 250 RESEARCHERS AND 80 LGS FAMILY MEMBERS FOR THE LGS RESEARCH MEETING OF THE MINDS: FINDING DISEASE MODIFYING THERAPIES FOR LGS. THE MEETING WAS A HUGE SUCCESS, GROWING THE LGS COLLABORATIVE RESEARCH NETWORK AND GETTING CONSENSUS ON TWO MAIN GOALS FOR THE FUTURE: (1) RESEARCH TO UNDERSTAND THE LGS NETWORK IS CRUCIAL TO FINDING BETTER TREATMENTS AND CURES FOR LGS, AND (2) RESEARCH TO UNDERSTAND THE EVOLUTION TO LGS IS CRUCIAL TO THE FUTURE PREVENTION OF LGS. THE LGS FOUNDATION IS NOW TARGETING THESE TWO AREAS OF RESEARCH IN IT'S GRANTS PROGRAM.

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.