PEDIATRIC BRAIN TUMOR FOUNDATION OF THE UNITED STATES INC
302 RIDGEFIELD COURT, ASHEVILLE, NC 28806 www.curethekids.org

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Organizations Filed Purposes: VISION: A WORLD WITHOUT CHILDHOOD BRAIN TUMORS.MISSION: CARE. CURE. THRIVE.

ELIMINATE CHILDHOOD BRAIN TUMORS AND SUPPORT FAMILIES LIVING WITH THIS DEVASTATING DISEASE.

THE PBTF FUNDS RESEARCH, SEEKING BETTER TREATMENTS AND ULTIMATELY CURES FOR PEDIATRIC BRAIN TUMORS. THE FOUNDATION ALSO PROVIDES EDUCATIONAL, EMOTIONAL, AND FINANCIAL SUPPORT FOR FAMILIES, INCLUDING SCHOLARSHIPS FOR SURVIVORS, BEREAVEMENT SUPPORT, PEER SUPPORT, FAMILY CAMPS AND EDUCATIONAL CONFERENCES. PROGRAM SERVICE ACCOMPLISHMENTS:PROVIDED $52,00 IN COLLEGE AND VOCATIONAL SCHOLARSHIPS TO 52 SURVIVORS.DISTRIBUTED 305 STARFOLIO RESOURCE NOTEBOOKS TONEWLY DIAGNOSED FAMILIES.PROVIDED 380 SURVIVORSHIP RESOURCE GUIDEBOOKS TO CAREGIVERS, SURVIVORS, AND HEALTHCARE PROFESSIONALS.CONDUCTED ONE "MEET THE EXPERTS" EDUCATIONAL/NETWORKING CONFERENCE.PROVIDED $409,580 IN EMERGENCY FINANCIAL AID TO 357 FAMILIES IN 12 STATES.HOSTED 128 FAMILIES AT SIX PEDIATRIC BRAIN TUMOR FAMILY CAMPS IN THREE STATES.SUPPORTED A TOTAL OF 1,343 INDIVIDUAL FAMILIES ACROSS THE COUNTRY THROUGH ITS FAMILY SUPPORT PROGRAMS AND RESOURCES.SUPPORTED THE ASSOCIATION OF PEDIATRIC ONCOLOGY SOCIAL WORKERS AND ASSOCIATION OF PEDIATRIC HEMATOLOGY ONCOLOGY NURSES ANNUAL CONFERENCES.LAUNCHED A SECOND ROUND OF OUR EARLY CAREER DEVELOPMENT GRANTS PROGRAM WHICH RESULTED IN NEW THREE-YEAR COMMITMENT TOTALING $900,000 FOR GRANTS TO THREE EXCEPTIONALLY GIFTED RESEARCHERS. THESE PROJECTS OPEN THE DOOR FOR NEW THERAPEUTIC STRATEGIES TO TREAT THE DEADLIEST FORM OF BRAIN TUMORS IN CHILDREN.AWARDED $67,000 TOTAL TO FOUR RESEARCH CENTERS AFFILIATED WITH THE FORMATION OF THE NEW DIPG ALL-IN CONSORTIUM FOR CLINICAL TRIALS. THE FUNDS WILL HELP COVER OPERATIONAL COSTS FOR A PROMISING, NOVEL COMBINATION THERAPY THAT TARGETS CANCER CELLS AND SPARES NORMAL BRAIN CELLS. AWARDED $100,000 TO PRINCIPAL INVESTIGATORS WITH A MULTI-INSTITUTIONAL ENDEAVOR CALLED PROJECT OPEN DIPG. IT IS THE CONTINUATION OF A GRANT AWARDED IN 2018 FOR A STUDY THAT USES STATE-OF-THE-ART TECHNOLOGY TO EVALUATE THE POTENCY OF A NEW CLASS OF DRUGS (CALLED HDAC INHIBITORS). FINDINGS CONTRIBUTE DATA TO A BRAND NEW, CLOUD-BASED DIGITAL PLATFORM THAT EMPOWERS RESEARCHERS AROUND THE WORLD TO SHARE PEDIATRIC BRAIN TUMOR PATIENT GENOMICS DATA AND COLLABORATE IN DISCOVERY. INVESTED $70,000 TO HOST ITS ANNUAL TRANSLATING DISCOVERIES TO CURE THE KIDS (TD2) SCIENCE MEETING. PRESENTATIONS AND DISCUSSIONS FOCUSED ON EVALUATION OF THE CHALLENGES AND POTENTIAL SOLUTIONS OF CRITICAL CHALLENGES OF DRUG DELIVERY TO THE CENTRAL NERVOUS SYSTEM. PARTICIPANTS INCLUDED OVER 40 WORLD-RENOWNED DOMAIN EXPERTS FROM 24 RESEARCH CENTERS AND COMPANIES IN THE US, CANADA, AND EUROPE. THE TD2 MEETING PROGRAM ALSO INCLUDES JOINT SESSIONS WITH PATIENT ADVOCATES AND REPRESENTATIVES FROM OTHER RESEARCH-FUNDING PEDIATRIC BRAIN TUMOR-FOCUSED NONPROFIT ORGANIZATIONS.SURVIVORSHIP REIMAGINED- COGNITIVE OUTCOMES AMONG PLGG SURVIVORS ARE VARIABLE AS DISRUPTION IN COGNITION, GROSS MOTOR ABILITIES AND EVERYDAY FUNCTIONING MAY BE SUBTLE IN SOME SURVIVORS AND MORE PRONOUNCED IN OTHERS. THEREFORE, IT IS ESSENTIAL TO IDENTIFY CHANGES IN COGNITION AS EARLY AS POSSIBLE SO THAT INTERVENTIONS CAN BE INITIATED QUICKLY IN ORDER TO OPTIMIZE LONG-TERM OUTCOMES. THE PLGA FUND'S GRANT AWARD TO A MULTI-INSTITUTIONAL TEAM* HARNESSES COMPUTER-BASED ASSESSMENTS FOR NEURO-PSYCHOLOGICAL FUNCTIONING. THIS STUDY IS IMPORTANT BECAUSE THERE HAS NEVER BEEN THE OPPORTUNITY TO STUDY SURVIVORS AND THE IMPACT OF THEIR BRAIN CANCER JOURNEY ON THEIR QUALITY OF LIFE. EVALUATION OF DIFFERENT TREATMENT PROTOCOLS AND IMPACT ON SURVIVORS ARE ALSO BEING CONSIDERED. IN ADDITION, THIS IS A PILOT STUDY WITH INTENTIONS FOR GRANT SUBMISSION TO THE NCI FOR GREATLY EXPANDED POPULATION STUDY ONCE EFFICACY IS PROVEN. OPTIMIZING OUTCOMES IN PLGG SURVIVORSHIP STUDY COLLABORATION BETWEEN GEORGIA STATE UNIVERSITY, CHILDREN'S HOSPITAL OF ATLANTA, AND NATIONAL CHILDREN'S MEDICAL CENTER - $34,722 PAID IN 2019, TOTAL GRANT: $364,000 OVER THREE YEARS).CLINICAL TRIALS ON THE FOREFRONT -CHALLENGING THE 'GOLD STANDARD' TREATMENT FOR BRAIN TUMOR PATIENTS HAS LONG BEEN ON THE AGENDA BUT WITH LITTLE ADVANCEMENT UNTIL NOW. IN 2019, PBTF HELPED FUND TWO TRIALS AS FOLLOWS: PBTC 055: PHASE I HCQ CLINICAL TRIAL - ADDING DRUG AGENT HYDROXYCHLOROQUINE TO EXISTING TARGETED THERAPY HELPS ARREST REPRODUCTION ABILITIES OF MUTANT TUMOR CELLS - $175,000 PAID IN 2019, TOTAL GRANT $350,000 OVER TWO YEARS. SIOP LOGGIC PHASE III CLINICAL TRIAL (20 EUROPEAN COUNTRIES) CHALLENGING STANDARD CHEMOTHERAPY WITH TARGETED MEK INHIBITOR.BASIC SCIENCE TRANSFORMS: MOUSE MODELS -HISTORICALLY, CREATING A MOUSE MODEL TO ACCURATELY REPLICATE LOW GRADE GLIOMA/ASTROCYTOMA TUMORS HAS BEEN A HUGE OBSTACLE FOR ADVANCING THE SCIENCE FOR PLGA/PLGG. IN 2019, PBTF FUNDED A PROMISING STUDY TO DISCOVER A MOUSE MODEL THAT CAN BE USED FOR PRE-CLINICAL DRUG TESTING. - HUMAN IPSC PLGA MODELS FOR THERAPEUTIC DRUG DISCOVERY & EVALUATION, WASHINGTON UNIVERSITY MEDICAL SCHOOL - $100,000 PAID IN 2019, TOTAL GRANT $300,000 OVER THREE YEARS. UNDERSTANDING MEDULLABLASTOMA UNDERSTANDING THE GENETIC COMPONENTS OF MEDULLABLASTOMA WILL ENABLE RESEARCHERS TO FIND TARGETED THERAPIES THAT CAN HELP ARREST ONE OF THE DEADLIEST BRAIN TUMOR TYPES. CRITICAL MECHANISMS OF GENE REGULATION IN MEDULLOBLASTOMA, MASSACHUSETTS GENERAL HOSPITAL - $150,000 PAID IN 2019, TOTAL GRANT $300,000 OVER TWO YEARS. TISSUE HARVESTING CLINICAL RESEARCH ASSISTANT IN ORDER TO PROVIDE TUMOR TISSUE FOR RESEARCH PROJECTS, TISSUE HARVESTING DURING SURGERY/BIOPSIES MUST BE CONSENTED BY PARENTS. THE CRA WHO PROVIDES THIS SERVICE AT THE DANA FARBER CANCER INSTITUTE IS FUNDED BY A GENEROUS GRANT FROM THE PLGA FUND AT PBTF - $166,000 IN 2019.WORLDWIDE EDUCATION/TRAINING GLOBAL COLLABORATION IN THE RESEARCH/MEDICAL/SCIENTIFIC COMMUNITY IS THE SINGLE MOST IMPORTANT INGREDIENT IN ENSURING ACCELERATION OF RESEARCH PRODUCTIVITY. PROVIDING SUPPORT FOR INTERNATIONAL MEETINGS WHICH SUPPORT CROSS POLLINATION OF INFORMATION BETWEEN DISCIPLINES, SUB-SPECIALTIES, COUNTRIES, INSTITUTIONS, ETC. IS CRITICAL. IN 2019, PBTF SPONSORED THE FOLLOWING CONFERENCES: TRANSLATIONAL RESEARCH: SOCIETY FOR NEURO ONCOLOGY - $30,000 PLGG COALITION WORKSHOP HEIDELBERG - $25,000 DFCI/HEIDELBERG PARTNERSHIP RESEARCH MEETING - $40,000SIXTY-SIX HOSPITALS RECEIVED GRANTS FROM THE PBTF'S VS. CANCER PROGRAM. THESE GRANTS, TOTALING $305,969.20, HELPED FUND CHILD LIFE AND FAMILY SUPPORT PROGRAMS SUCH AS: CHILDREN'S HOSPITAL OF PITTSBURGH PITTSBURGH, PA, SURVIVORSHIP SYMPOSIUMS WITHIN THE NEURO- ONCOLOGY SURVIVORSHIP PROGRAM CREATED TO GIVE PATIENTS WHO HAVE SURVIVED BRAIN AND SPINE TUMORS A DEDICATED TEAM, TRAINED IN BOTH NEURO-ONCOLOGY AND SURVIVORSHIP. LEVINE CHILDREN'S HOSPITAL CHARLOTTE, NC, NEUROPSYCHOLOGICAL TESTING WITHIN THE BRAIN TUMOR PROGRAM ALLOWING NEUROSURGEONS AND NEUROONCOLOGISTS TO HAVE AN IDEA OF EACH PATIENT'S COGNITIVE DEVELOPMENT PRIOR TO TREATMENT AND HOW TREATMENT IMPACTS THEM COGNITIVELY. ANN & ROBERT H. LURIE CHILDREN'S HOSPITAL OF CHICAGO CHICAGO, IL, DEDICATED EDUCATION LIAISON TO SUPPORT CHILDREN WITH BRAIN TUMORS IN SCHOOL, HELPING TO INFORM PARENTS OF THE CHILD'S EDUCATION RIGHTS; HELPING SCHOOL PROGRAMS UNDERSTAND THE IMPLICATIONS ASSOCIATED WITH A CHILD'S DIAGNOSIS; AND PROBLEM SOLVING WITH PARENTS AND SCHOOLS AROUND BARRIERS TO EDUCATION SERVICES. EL PASO CHILDREN'S HOSPITAL EL PASO, TX, CHILD LIFE THERAPEUTIC ARTS PROGRAM, HELPING CHILDREN WITH A CANCER DIAGNOSIS LEARN TO USE THE CREATIVE ARTS TO HELP THEM COPE WITH FEAR, ANXIETY AND SEPARATION FROM HOME AND SCHOOL. CHILDREN'S HOSPITAL OF LOS ANGELES LOS ANGELES, CA, PERSONNEL COSTS OF A POSTDOCTORAL PSYCHOLOGY FELLOW AND LICENSED PSYCHOLOGIST WHO WILL HAVE DEDICATED TIME IN THE NEURO-ONCOLOGY CLINIC TO DELIVER INTERPERSONAL AND EMOTIONAL SUPPORT SERVICES TO ADDRESS THE BEHAVIORAL AND DEVELOPMENTAL NEEDS OF PEDIATRIC BRAIN TUMOR PATIENTS AND THEIR FAMILIES.

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