Dravet Syndrome Foundation Inc

THE MISSION OF THE DRAVET SYNDROME FOUNDATION IS TO AGGRESSIVELY RAISE FUNDS FOR DRAVET SYNDROME & RELATED EPILEPSIES; SUPPORT & FUND RESEARCH; INCREASE AWARENESS; & PROVIDE SUPPORT TO AFFECTED INDIVIDUALS & FAMILIES.

DSF FUNDS RESEARCH FOR BETTER TREATMENTS AND A CURE FOR DRAVET SYNDROME AND 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 CAN QUALIFY FOR LARGER GOVERNMENTAL FUNDING. SINCE 2009, DSF HAS AWARDED OVER $6.4 MILLION TO 56 RESEARCH ENDEAVORS. RESEARCH AREAS INCLUDE SUDEP, GENE THERAPY, DRUG DISCOVERY, SCREENING, TREATMENTS, GENETICS, EPIDEMIOLOGY AND NEURONAL NETWORKS. IN 2020, DSF HIRED A SCIENTIFIC DIRECTOR TO SERVE AS THE LIAISON BETWEEN THE MEDICAL/SCIENTIFIC COMMUNITY AND DSF, DEVELOPING STRATEGIES TO SUPPORT RESEARCH, MANAGE DSF'S INVOLVEMENT IN PROJECTS, AND MOVE PROJECTS FORWARD WITH ASSISTANCE IN PROJECT MANAGEMENT, MANUSCRIPT PREPARATION, AND OTHER WRITING OPPORTUNITIES. THE SCIENTIFIC DIRECTOR ACTS AS A REPRESENTATIVE OF DSF TO OTHER INSTITUTIONS INCLUDING NIH, PDA, PHARMA AND BIOTECHNOLOGY COMPANIES.

RECEIVING A DIAGNOSIS OF DRAVET SYNDROME (DS) CAN BE OVERWHELMING AND MAY LEAVE A FAMILY WITH MANY UNANSWERED QUESTIONS. DSF PRODUCES A BIENNIAL PROFESSIONAL AND FAMILY CONFERENCE DESIGNED TO UNITE COMMUNITY STAKEHOLDERS TO ADDRESS THESE QUESTIONS - FAMILIES, CAREGIVERS, CLINICIANS, RESEARCHERS, AND OTHER PROFESSIONALS. OUR 2022 CONFERENCE WELCOMED OVER 300 PARENTS, CHILDREN AND PROFESSIONALS. THE 3-DAY EVENT FEATURED OVER 30 SPEAKERS WHO PRESENTED ON CURRENT RESEARCH, CO-MORBIDITIES, BEST CARE PRACTICES, AND DAILY LIVING CHALLENGES. IN 2017 THE DSF FAMILY NETWORK WAS ESTABLISHED TO PROVIDE REGIONAL SUPPORT TO FAMILIES. AS PART OF THIS INITIATIVE, 5 EDUCATIONAL WORKSHOPS ARE HELD ACROSS THE COUNTRY ON ODD-NUMBERED YEARS, OPPOSITE OF OUR BIENNIAL CONFERENCE. THESE WORKSHOPS ARE A TIME FOR PATIENTS AND THEIR FAMILIES TO COME TOGETHER TO LEARN ABOUT RESEARCH AND TREATMENT OPTIONS, CONNECT WITH OTHERS IN THEIR REGION, AND BE A PART OF DSF'S SHARED VISION FOR A BETTER OUTCOME FOR THOSE AFFECTED BY DS. IN ADDITION TO THESE CONFERENCES AND WORKSHOPS, DSF HAS ESTABLISHED AN INTERNATIONAL PATIENT ASSISTANCE GRANT PROGRAM TO HELP PATIENTS RECEIVE MEDICAL EQUIPMENT, THERAPY DEVICES, AND EDUCATION AIDES ASSOCIATED WITH DS THAT ARE NOT COVERED THROUGH PRIVATE INSURANCE OR OTHER ASSISTANCE PROGRAMS. SINCE 2009, DSF HAS AWARDED OVER $222K IN ASSISTANCE TO FAMILIES. ON FEBRUARY 3, 2022, DSF HELD AN EXTERNALLY-LED PATIENT-FOCUSED DRUG DEVELOPMENT MEETING ON DS. THIS MEETING WAS A LONG-AWAITED OPPORTUNITY FOR OUR PATIENT COMMUNITY TO EDUCATE REPRESENTATIVES OF THE FDA AND PHARMACEUTICAL COMPANIES, AS WELL AS ACADEMIC RESEARCHERS AND CLINICIANS, ABOUT THE CHALLENGES THAT INDIVIDUALS LIVING WITH DS FACE DAILY. OUR OBJECTIVE WAS TO GIVE PATIENT FAMILIES A PLATFORM TO SHARE WHAT IT MEANS TO HAVE A DS DIAGNOSIS, WHICH SYMPTOMS SHOULD BE PRIORITIZED, AND HOW THIS DISEASE IMPACTS THE QUALITY OF LIFE FOR THE PATIENT AND FAMILY SO THAT THE FDA AND PHARMACEUTICAL COMPANIES CAN UNDERSTAND THE PATIENT EXPERIENCE.

DSF PRODUCES AN ANNUAL RESEARCH ROUNDTABLE MEETING TO PROVIDE OPPORTUNITY FOR RESEARCHERS AND CLINICIANS TO COLLABORATE AND DISCUSS BETTER TREATMENT OPTIONS AND A ROADMAP TOWARD A CURE AND HOW TO BEST FACILITATE BOTH. THIS MEETING STARTED IN 2010 AS A BRAINSTORMING SESSION FOR THE FEW RESEARCHERS WORKING ON DRAVET SYNDROME (DS). DSF HOSTED ITS 13TH ANNUAL RESEARCH ROUNDTABLE, AND HAD OUR LARGEST ATTENDANCE YET, WITH OVER 200 PARTICIPANTS. IN 2022, DSF DEVELOPED A PROFESSIONAL EDUCATION VIDEO SERIES TO HIGHLIGHT THE LATEST GUIDELINES IN CLINICAL CARE. THE DEVELOPMENT OF THIS UPDATED PROFESSIONAL EDUCATIONAL SERIES WAS PROMPTED BY THE RECENT PUBLICATION OF THE INTERNATIONAL TREATMENT CONSENSUS ON DIAGNOSIS AND MANAGEMENT OF DRAVET SYNDROME. ALSO IN 2022, DSF INVITED ADULT NEUROLOGISTS WITH AN INTEREST IN LEARNING MORE ABOUT DS TO ATTEND A MEETING FOCUSED SPECIFICALLY ON HOW TO BETTER SUPPORT FAMILIES THROUGH THE TRANSITION FROM PEDIATRIC TO ADULT CARE.