2024-01-25T18:14:34-06:00 2022-09-30 440160260 FORVIS LLP 500 RIDGEFIELD COURT ASHEVILLE NC 28806 990 2021-10-01 581966822 PEDIATRIC BRAIN TUMOR FOUNDATION OF THE UNITED STATES INC PEDI 8286656891 6065 ROSWELL ROAD NE STE 505 ATLANTA GA 30328 LARRY LITTLE SECRETARY 8286656891 2024-01-25 1 LARRY LITTLE 999009999 AMY BIBBY P00445891 8282542254 2024-01-25 3 AAL1 IAL1 2021 2023-04-26 12:10:37Z X COURTNEY DAVIES 6065 ROSWELL ROAD NE STE 505 ATLANTA GA 30328 6022145 0 X WWW.CURETHEKIDS.ORG X 1992 GA ELIMINATE CHILDHOOD BRAIN TUMORS AND SUPPORT FAMILIES LIVING WITH THIS DEVASTATING DISEASE. 12 11 26 350 0 0 6015457 6000577 0 0 -15461 21568 0 0 5999996 6022145 2128614 2492677 0 0 1907400 2189489 0 0 626442 1231795 1505808 5267809 6187974 732187 -165829 6277731 5993060 846841 727999 5430890 5265061 X VISION: A WORLD WITHOUT CHILDHOOD BRAIN TUMORS.MISSION: CARE. CURE. THRIVE. 0 0 4681490 2492677 6022145 SEE SCHEDULE O 4681490 1 1 0 0 0 0 0 0 0 1 1 0 0 1 0 1 1 0 0 0 0 0 0 0 0 0 0 1 1 1 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 1 26 0 1 26 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 12 11 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AZ CA FL GA IL KS KY LA ME MD MA MI NH NJ NM NY NC ND OH OR PA RI SC VA WA WV WI AL AR CO CT OK TN UT HI MN MS MO X X X GEOFF STILL 8284180814 6065 ROSWELL ROAD NE STE 505 ATLANTA GA 30328 ANDREW AJ JANOWER CHAIR 1.00 X X 0 0 0 KRISTIN YOUNG VICE CHAIR 1.00 X X 0 0 0 ANNE SUTTON SECRETARY 1.00 X X 0 0 0 JEFF GELFAND TREASURER 1.00 X X 0 0 0 CHUCK BODERMAN DIRECTOR 1.00 X 0 0 0 CHASE JONES DIRECTOR 1.00 X 0 0 0 LARRY LITTLE DIRECTOR 1.00 X 0 0 0 KARL MUELLER DIRECTOR 1.00 X 0 0 0 KEN MURPHY DIRECTOR 1.00 X 0 0 0 JOHN RAGNONI DIRECTOR 1.00 X 0 0 0 SUSIE ROSSICK DIRECTOR 1.00 X 0 0 0 JILL SCOGNAMIGLIO DIRECTOR 1.00 X 0 0 0 COURTNEY DAVIES PRESIDENT/CEO 50.00 X 272939 0 13518 GEOFF STILL CFO 50.00 X 146382 0 17765 419321 0 31283 2 0 1 0 0 344679 5655898 10508 6000577 20874 20874 694 0 694 694 694 6022145 0 0 21568 2059678 2059678 432999 432999 450604 296916 116835 36853 75000 75000 1357816 846573 266137 245106 51584 33580 9669 8335 155647 95996 29245 30406 98838 64388 18643 15807 570751 436877 118619 15255 119156 21247 614 97295 150282 79259 26845 44178 12916 7176 5740 141230 50000 83878 7352 59554 30918 16416 12220 21021 19323 848 850 5703 5703 21996 8007 13989 FEES & LICENSES 334796 98893 155664 80239 MISCELLANEOUS 55294 19937 5790 29567 AUTO EXPENSE 13109 4723 5407 2979 6187974 4681490 880042 626442 X 2257178 1407813 519490 618647 27545 94517 44390 8665 11427 35725 3462091 3491679 0 344679 6277731 5993060 74542 289128 772299 438871 846841 727999 X 2078046 2425569 3352844 2839492 5430890 5265061 6277731 5993060 -165829 0 X X 0 1 X 1 0 X 5643146 9927494 6471860 3836629 6000577 31879706 5643146 9927494 6471860 3836629 6000577 31879706 735543 31144163 109546 16620 45248 14534 21568 207516 32087222 0.97060 0.95740 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 6187974 6187974 459399 114850 0 0 404647 506409 413390 459399 1783845 2675768 101162 126602 103348 114850 445962 668943 1041946 431821 1473767 816243 225703 1041946 1016243 200000 816243 1016243 1016243 1716243 700000 1016243 1.00000 0 0 44390 8665 35725 35725 ERC RECEIVABLE 344679 344679 X 6021114 0 6021114 337 694 1031 6022145 6186943 0 6186943 337 694 1031 6187974 PART V, LINE 4: THE ENDOWMENT FUNDS ARE A BOARD DESIGNATED RESERVE FUND TO ASSURE THE FOUNDATION'S ABILITY TO RESPOND TO PROGRAM RELATED OPPORTUNITIES (BOTH RESEARCH AND FAMILY SUPPORT) THAT MAY BE BEYOND THE FUNDS AVAILABLE FROM NORMAL OPERATIONS. PART X, LINE 2: THE FOUNDATION IS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE; ACCORDINGLY, THE ACCOMPANYING FINANCIAL STATEMENTS DO NOT REFLECT A PROVISION OR LIABILITY FOR FEDERAL AND STATE INCOME TAXES. THE FOUNDATION HAS DETERMINED THAT IT DOES NOT HAVE ANY MATERIAL UNRECOGNIZED TAX BENEFITS OR OBLIGATIONS AS OF SEPTEMBER 30, 2022. PART XI, LINE 4B - OTHER ADJUSTMENTS: GAIN ON SALE OF ASSETS 694. PART XII, LINE 4B - OTHER ADJUSTMENTS: GAIN ON SALE OF ASSET 694. 1 AFLAC CANCER AND BLOOD DISORDER CENTER 5455 MERIDIAN MARK ROAD STE 400 ATLANTA GA 30342 582367819 501(C)(3) 65000 0 RESEARCH GRANT ANN & ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO 225 E CHICAGO AVE BOX 130 CHICAGO IL 60611 362170833 501(C)(3) 7122 0 VS. CANCER GRANT ARMS WIDE OPEN CHILDHOOD CANCER FOUNDATION PO BOX 258 MARLBORO NJ 07746 270811733 501(C)(3) 10000 0 VS. CANCER GRANT CAMP RONALD MCDONALD FOR GOOD TIMES 56400 APPLE CANYON RD MOUNTAIN CENTER CA 92561 953167869 501(C)(3) 8750 0 VS. CANCER GRANT CENTRAL BRAIN TUMOR REGISTRY OF THE UNITED STATES 625 S COUNTY LINE RD HINSDALE IL 60521 363918407 501(C)(3) 59363 0 RESEARCH GRANT CHILDREN'S RESEARCH INSTITUTE 7144 13TH PL NW WASHINGTON DC 20012 521640403 501(C)(3) 32346 0 RESEARCH GRANT CHOP RESEARCH INSTITUTE 3401 CIVIC CENTER BLVD ROOM P1130 PHILADELPHIA PA 19104 231352166 501(C)(3) 64000 0 SYMPOSIUM EXPENSES DANA FARBER CANCER INSTITUTE 450 BROOKLINE AVE BOSTON MA 02215 422263040 501(C)(3) 465399 0 RESEARCH GRANT DUKE UNIVERSITY OFFICE OF DEVELOPMENT AND COMMUNICATIONS DUMC-3828 DURHAM NC 27701 560532129 501(C)(3) 100000 0 EARLY CAREER DEVELOPMENT EAST TENNESSEE CHILDREN'S HOSPITAL 2018 W CLINCH AVE KNOXVILLE TN 37916 626002604 501(C)(3) 52428 0 VS. CANCER GRANT GEORGIA STATE UNIVERSITY RESEARCH FOUNDATION 30 COURTLAND ST ATLANTA GA 30303 581845423 501(C)(3) 52239 0 RESEARCH GRANT INTERPLAN CONGRESS MANAGEMENT - ISPNO LANDSBERGER STRASSE 155 MUENCHEN GM 80687 501(C)(3) 35105 0 RESEARCH GRANT REGENTS OF THE UNIVERSITY OF MICHIGAN 500 S STATE STREET ANN ARBOR MI 48109 386006309 501(C)(3) 349845 0 RESEARCH GRANT SAINT JUDE CHILDRENS RESEARCH HOSPITAL 53 PERIMETER CENTER E SUITE 100 ATLANTA GA 30346 620646012 501(C)(3) 250000 0 RESEARCH GRANT SICKKIDS FOUNDATION 525 UNIVERSITY AVE TORONTO ON 5G 2LM3 CA 501(C)(3) 55000 0 RESEARCH GRANT TOUGH2GETHER AGAINST DIPG CO AWOCCF 1600 POYNTZ AVE STE A MANHATTAN KS 66502 270811733 501(C)(3) 10000 0 RESEARCH GRANT UNIVERSITY OF CINCINNATI 2600 CLIFTON AVE CINCINNATI OH 45221 311779020 501(C)(3) 100000 0 RESEARCH GRANT UPMC CHILDREN'S HOSPITAL OF PITTSBURGH 4401 PENN AVE PITTSBURGH PA 15224 251865744 501(C)(3) 8512 0 RESEARCH GRANT WASHINGTON UNIVERSITY IN ST LOUIS 1 BROOKINGS DRIVE STLOUIS MO 63130 431519670 501(C)(3) 100000 0 RESEARCH GRANT UNC LINEBERGER COMPREHENSIVE CANCER CENTER PO BOX 1050 CHAPEL HILL NC 27514 566001393 501(C)(3) 15389 0 VS. CANCER GRANT OKLAHOMA CHILDREN'S HOSPITAL 1200 EVERETT DR BOX 71 OKLAHOMA CITY OK 73104 731200262 501(C)(3) 14089 0 VS. CANCER GRANT GEISINGER JANET WEIS CHILDREN'S HOSPITAL 100 N ACADEMY AVE MC 40-36 DANVILLE PA 178229800 240795959 501(C)(3) 9533 0 VS. CANCER GRANT BAYSTATE MEDICAL CENTER 280 CHESTNUT ST SPRINGFIELD MA 011043563 042790311 501(C)(3) 9316 0 VS. CANCER GRANT CHILDREN'S HOSPITAL OF ILLINOIS 530 NE GLEN OAK AVE PEORIA IL 616370001 320353954 501(C)(3) 9129 0 VS. CANCER GRANT CHILDREN'S HEALTHCARE OF ATLANTA AFLAC CANCER CENTER 3395 NORTHEAST EXPY NE ATLANTA GA 30341 582367819 501(C)(3) 8959 0 VS. CANCER GRANT UPMC CHILDREN'S HOSPITAL OF PITTSBURGH 1 CHILDRENS HOSPITAL DR 4401 PENN AVE PITTSBURGH PA 152241529 251865744 501(C)(3) 8512 0 RESEARCH GRANT CHILDREN'S HOSPITAL AND MEDICAL CENTER OMAHA 8200 DODGE ST OMAHA NE 681144113 470379754 501(C)(3) 8443 0 VS. CANCER GRANT LEVINE CHILDREN'S HOSPITAL ATRIUM HEALTH FOUNDATION 208 EAST BLVD CHARLOTTE NC 282034720 566060481 501(C)(3) 8218 0 VS. CANCER GRANT TAMPA GENERAL HOSPITAL 1 TAMPA GENERAL CIRCLE TAMPA FL 336063571 237354477 501(C)(3) 7661 0 VS. CANCER GRANT ANN & ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO 225 E CHICAGO AVE BOX 130 CHICAGO IL 606112991 362170833 501(C)(3) 7122 0 VS. CANCER GRANT UNIVERSITY OF VIRGINIA HEALTH SYSTEM UVA CHILDREN'S HOSPITAL 1204 W MAIN ST CHARLOTTESVILLE VA 229032824 810868533 501(C)(3) 6435 0 VS. CANCER GRANT NATIONWIDE CHILDREN'S 525 E MOUND ST COLUMBUS OH 432155540 311036372 501(C)(3) 5908 0 VS. CANCER GRANT CHILDREN'S NATIONAL MEDICAL CENTER 1 INVENTA PL FL 6 SILVER SPRING MD 209105176 521640403 501(C)(3) 5480 0 VS. CANCER GRANT SEATTLE CHILDREN'S 4800 SAND POINT WAY NE SEATTLE WA 981053901 910564748 501(C)(3) 5026 0 VS. CANCER GRANT HASBRO CHILDREN'S HOSPITAL PO BOX H PROVIDENCE RI 029011697 222538470 501(C)(3) 5015 0 VS. CANCER GRANT SYDNEY'S INCREDIBLE DEFEAT OF EWING'S SARCOMA 1655 N COMMERCE PKWY SUITE 102 WESTON FL 33331 453368209 501(C)(3) 78486 0 GRANT 41 BUTTERFLY FUND, EMERGENCY FINANCIAL ASSISTANCE PROGRAM FOR FAMILIES 381 424999 DIRECT AID TO MELTON FAMILY 1 8000 PART I, LINE 2: ALL ANNUAL RESEARCH GRANTS ARE REVIEWED BY OUR RESEARCH ADVISORY NETWORK AND EVALUATED ON SEVERAL CRITERIA, INCLUDING SCIENTIFIC MERIT OF THE GRANT APPLICATION; SCIENTIFIC BACKGROUND OF THE RESEARCHERS; THE PEER REVIEWED RESEARCH PUBLICATIONS OF THE PRINCIPLE INVESTIGATORS APPLYING; THE SUPPORTING COLLABORATIVE RESEARCH ENVIRONMENT IN THE RESEARCH INSTITUTION; AND THE VIABILITY OF RESEARCH PROPOSED, AND FACILITIES AVAILABLE. EACH GRANT RECIPIENT IS REQUIRED TO SUBMIT PERIODIC UPDATES, AND A FINAL REPORT BEFORE THE FINAL GRANT PAYMENT IS MADE. EACH RESEARCH APPLICATION HAS TO HAVE A HYPOTHESIS DRIVEN RESEARCH PROPOSAL. EACH APPLICATION MUST HAVE A LIST OF SPECIFIC AIMS THAT ARE TO BE ACHIEVED OVER THE TIMELINE OF THE RESEARCH PROJECT. A TIME LINE IS REQUESTED FOR THE ACHIEVEMENT OF THE SPECIFIC AIMS. THE PROGRESS REPORTS REQUIRE THAT THE ACHIEVEMENT OF SPECIFIC AIMS BE DETAILED WITH A SCIENTIFIC DESCRIPTION OF THE MANNER IN WHICH THEY WERE ACHIEVED. IF AN EVENT HAS OCCURRED THAT ALTERS THE ACHIEVEMENT OF THE SPECIFIC AIMS WITHIN THE TIME LINE OF THE RESEARCH PLAN THE RESEARCHERS MUST GIVE A REASON THAT IT HAS NOT BEEN ACHIEVED AND A NO COST EXTENSION MAY BE REQUESTED AND A NEW TIMELINE IS ESTABLISHED BEFORE THE FINAL PROGRESS REPORT IS ISSUED. EACH GRANT ALLOWS FOR THE OPPORTUNITY OF A SITE VISIT BY THE PBTF AND THESE SITE VISITS ARE MADE BY THE DIRECTOR OF RESEARCH AS WELL AS THE SENIOR SCIENTIFIC RESEARCH ADVISOR, THE PBTF PRESIDENT AS WELL AS THE EXECUTIVE DIRECTOR. RESEARCHERS PRESENT THEIR RESEARCH RESULTS IN PERSON AND THE PBTF ASKS QUESTIONS ABOUT THE RESULTS. ALL GRANT APPLICATIONS AND RESEARCH PROJECTS HAVE THE SAME REQUIREMENTS ON GRANT APPROVAL AND REPORTING REGARDLESS OF THE LOCATION OF THE RESEARCHER AND HIS/HER INSTITUTION. THESE REPORTS ARE REVIEWED BY OUR DIRECTOR OF RESEARCH FUNDING AND OUR CONTRACTED SENIOR SCIENTIFIC RESEARCH ADVISOR. FINAL APPROVAL ON ALL GRANTS IS CONDITIONED ON BOARD OF DIRECTOR APPROVAL. X X X 0 0 0 0 0 0 0 0 0 COURTNEY DAVIES PRESIDENT/CEO 272939 0 0 0 0 0 0 0 13518 0 286457 0 0 0 GEOFF STILL CFO 146382 0 0 0 0 0 7367 0 10398 0 164147 0 0 0 AMY WEINSTEIN AJ JANOWER - CHAIR 75000 NATIONAL DIRECTOR, RESEARCH INVESTMENTS (INDEPENDENT CONTRACTOR) 0 PART III LINE 4A THE PEDIATRIC BRAIN TUMOR FOUNDATION (PBTF) LEADS THE WAY IN ENDING THE CHILDHOOD CANCER COMMUNITY'S BIGGEST CRISIS THROUGH RESEARCH FUNDING, FAMILY SUPPORT AND ADVOCACY. DEDICATED WHOLLY TO ADDRESSING THIS RARE, BUT DEVASTATING DISEASE AND GUIDED BY THE EXPERIENCES OF PATIENTS, SURVIVORS, THEIR PARENTS, AND SIBLINGS, PBTF IS THE ONLY ORGANIZATION TO MEET FAMILIES' NEEDS ALONG EVERY STEP OF THEIR CANCER JOURNEY. THE LARGEST PATIENT ADVOCACY FUNDER OF PEDIATRIC BRAIN TUMOR RESEARCH, WE ALSO FUND AND ADVOCATE FOR INNOVATIVE PROJECTS THAT LEAD TO VITAL DISCOVERIES, NEW CLINICAL TRIALS, AND BETTER TREATMENTS ALL BRINGING US CLOSER TO A CURE. 2022 RESEARCH INVESTMENTS: IN 2022, PBTF CONTINUED TO EXPAND THE BREADTH OF OUR ROBUST SCIENTIFIC PORTFOLIO BY INVESTING IN 17 NEW CUTTING-EDGE PEDIATRIC BRAIN TUMOR RESEARCH PROJECTS AT A DOZEN MEDICAL INSTITUTIONS AROUND THE COUNTRY. THE FOCUS AREA FOR THESE STUDIES TARGETED TWO OF THE RAREST AND DEADLIEST FORMS OF PEDIATRIC BRAIN TUMORS, WITH THE LAUNCH OF A NEW INFANT PINEOBLASTOMA RESEARCH FUND AND THE EXPANSION OF OUR DIPG/DMG RESEARCH INVESTMENTS, AS WELL AS CONTINUED INVESTMENTS IN THE STUDY OF THE MOST COMMON FORM OF CHILDHOOD BRAIN TUMORS, PEDIATRIC LOW-GRADE GLIOMA. PREVIOUS YEARS' SEED FUNDING ALSO CONTINUED TO DELIVER RESULTS, WITH OVER A DOZEN SCIENTIFIC MANUSCRIPTS WRITTEN AND ACCEPTED FOR PUBLICATION AND THE SUCCESSFUL APPLICATION BY PBTF-FUNDED RESEARCHERS FOR MULTI-MILLION-DOLLAR NCI/NIH GRANTS TO CONTINUE WORK WITH PROVEN EFFICACY. OUR MISSION OF SUPPORTING THE BRIGHTEST MINDS IN THE FIELD TO ACCELERATE THE PACE OF TARGETED DRUG DEVELOPMENT WAS ALSO ACHIEVED THROUGH PARTICIPATION IN INTERNATIONAL CONFERENCES AND TARGETED STRATEGY FORUMS. ALL RESEARCH FUNDING AWARDS ARE GUIDED BY OUR STRATEGIC PLAN TO DRIVE BASIC SCIENCE EXPLORATION AND ACCELERATE CLINICAL RESEARCH OUTCOMES, AND THEY REFLECT OUR GOALS OF FOSTERING COLLABORATION IN THE FIELD, PROVIDING OPPORTUNITIES FOR EARLY CAREER INVESTIGATORS TO ESTABLISH PRODUCTIVE LABS, AND FUNDING INFRASTRUCTURE AND CORE RESOURCES THAT TURBOCHARGE THE PACE OF RESEARCH AROUND THE WORLD. CORE PROJECT RESOURCES: INFRASTRUCTURE, TECHNOLOGY AND CORE RESOURCES ARE AN ESSENTIAL BUT OFTEN OVERLOOKED INGREDIENT TO UNLOCKING NEW SCIENTIFIC BREAKTHROUGHS. PBTF INVESTED IN THE FOLLOWING PROJECTS IN 2022 TO SUPPORT THIS FREQUENTLY UNMET NEED: DAVID ANDRYSIAK CLINICAL RESEARCH ASSISTANT POSITION - DANA FARBER CANCER INSTITUTE - WITH SUPPORT FROM THE PLGA FUND AT PBTF, THE ORGANIZATION INVESTED IN CRITICAL RESOURCE PERSONNEL THROUGH THE EXECUTION OF A 3-YEAR FUNDING COMMITMENT. IN 2022, WE MADE A PAYMENT OF $70,666 TOWARDS OUR TOTAL $212,000 COMMITMENT. THIS STAFF POSITION IS RESPONSIBLE FOR TUMOR TISSUE COLLECTION, OBTAINING PARENTS' CONSENT PRIOR TO SURGERY AND SHEPHERDING TISSUE HARVESTING DURING SURGERIES AND BIOPSIES. WITH AN INCREASE IN VIABLE TISSUE SAMPLES, RESEARCHERS HAVE THE MATERIAL NEEDED TO TEST NEW HYPOTHESES AND POTENTIAL TREATMENT OPTIONS. CLINICAL DATA COLLECTION AND MANAGEMENT FOR LOW GRADE GLIOMA SUBJECTS - CHILDREN'S BRAIN TUMOR NETWORK (CBTN) - THIS $64,000 INVESTMENT THROUGH THE PLGA FUND AT PBTF WILL ENSURE THAT PLGG PATIENTS' CLINICAL DATA WILL BE TRACKED LONGITUDINALLY BY CONSENTING SUBJECTS AND TRACKING THEIR CLINICAL DATA. SIMILAR TO THE CLINICAL RESEARCH ASSISTANT POSITION AT DANA FARBER CANCER INSTITUTE, THIS ROLE HELPS ENSURE AN INCREASE OF VIABLE TISSUE SAMPLES FOR SCIENTIFIC RESEARCH. CHILDHOOD AND ADOLESCENT BRAIN TUMOR STATISTICAL REPORT CENTRAL BRAIN TUMOR REGISTRY OF THE UNITED STATES (CBTRUS) IN 2022, PBTF COMMISSIONED A FIRST-OF-ITS-KIND STATISTICAL REPORT BY CBTRUS TO INCREASE UNDERSTANDING OF THE SCOPE AND SEVERITY OF PEDIATRIC BRAIN CANCER. PUBLISHED IN NEURO-ONCOLOGY, THIS REPORT CONTAINS THE MOST UP-TO-DATE POPULATION-BASED DATA ON PRIMARY BRAIN AND OTHER CENTRAL NERVOUS SYSTEM (CNS) TUMORS IN CHILDREN AND ADOLESCENTS AVAILABLE IN THE UNITED STATES. IT IS THE FIRST OF ITS KIND TO REPRESENT THE PEDIATRIC AND ADOLESCENT POPULATION, PROVIDE STATE-LEVEL DATA, AND INCLUDE MOLECULAR DATA FOR SOME TUMOR SUBTYPES. PBTF AWARDED CBTRUS A $65,000 GRANT IN 2022 TO FUND THE REPORT. DIPG/DMG NATIONAL BRAIN TUMOR BOARD - IN PARTNERSHIP WITH THE DIPG/DMG RESEARCH FUNDERS ALLIANCE, PBTF HELPED ESTABLISH THIS TUMOR BOARD IN 2022 WITH A 1-YEAR $10,000 FUNDING COMMITMENT. MRI GOGGLES GRANT - EAST TENNESSEE CHILDREN'S HOSPITAL - PBTF INVESTED $49,225 IN 2022 TO SUPPORT THE PURCHASE OF SPECIALIZED VIDEO GOGGLES FOR PEDIATRIC PATIENTS DURING MRIS. THESE GOGGLES OFFER DISTRACTIONS AND DRAMATICALLY REDUCE UNEXPECTED LOUD MRI GRADIENT NOISE TO SOOTHE ANXIOUS CHILDREN DURING THIS IMPORTANT BUT OVERWHELMING PROCEDURE. BASIC SCIENCE INVESTMENTS: FUNDING NOVEL CONCEPTS BROUGHT FORWARD BY CLINICIANS AND SCIENTISTS AROUND THE WORLD IS AT THE VERY CORE OF PBTF'S PHILOSOPHY THAT FINDING THE NEXT TARGETED THERAPY WILL ONLY HAPPEN WHEN NEW IDEAS, NEW STRATEGIES, AND NEW HYPOTHESES HAVE AN OPPORTUNITY FOR TESTING. DURING 2022, PBTF INVESTED IN THE FOLLOWING BASIC SCIENCE INITIATIVES: OPTIMIZING TARGETED INHIBITION TO OVERCOME RESISTANCE AND/OR REBOUND GROWTH IN PLGA BRAIN TUMORS - DANA FARBER CANCER INSTITUTE $190,047 FUNDED IN 2022 OF A 1-YEAR GRANT DISSECTING CELLULAR INTERACTIONS IN PLGGS - DANA FARBER CANCER INSTITUTE - $204,686 FUNDED IN 2022 OF A 1-YEAR GRANT RAPID MOLECULAR TESTING OF HIGH GRADE BRAIN TUMORS - UNIVERSITY OF MICHIGAN MEDICAL CENTER $130,000 FUNDED IN 2022 OF A 1-YEAR GRANT DEFINING ESSENTIAL GENES AND TARGETABLE VULNERABILITIES IN INFANT PINEOBLASTOMA SICK KIDS OF TORONTO $55,000 FUNDED IN 2022 OF A 1-YEAR GRANT (TOTAL FUNDING COMMITMENT OF $105,000) INTEGRATED MOLECULAR AND CLINICAL CHARACTERIZATION OF THE DISSEMINATED PLGG VANDERBILT MEDICAL CENTER $197,500 FUNDED IN 2022 OF A 1-YEAR GRANT RARE BUT UNFORGOTTEN: PRECLINICAL MODELING & SCREENING OF HIGH-RISK PINEOBLASTOMA SUBGROUPS ST. JUDE MEDICAL CENTER $100,000 FUNDED IN 2022 OF A 1-YEAR GRANT NOVEL IMMUNE MEDIATED-GENE THERAPY FOR HIGH GRADE GLIOMA UNIVERSITY OF MICHIGAN $219,845 FUNDED IN 2022 OF A 3-YEAR GRANT (TOTAL FUNDING COMMITMENT OF $669,530) OPTIMIZING OUTCOMES FOR PLGG PATIENTS NATIONAL CHILDREN'S MEDICAL CENTER, GEORGIA STATE UNIVERSITY AND CHILDREN'S HOSPITAL OF ATLANTA $36,803 FUNDED IN 2022 OF A 3-YEAR GRANT (TOTAL FUNDING COMMITMENT OF $364,122; 2022 FUNDING INCLUDED $28,593 TO CHILDREN'S NATIONAL MEDICAL CENTER AND $8,210 TO CHILDREN'S HOSPITAL OF ATLANTA) HUMAN IPSC PLGA MODELS FOR THERAPEUTIC DRUG DISCOVERY AND EVALUATION WASHINGTON UNIVERSITY OF ST. LOUIS MEDICAL CENTER $100,000 FUNDED IN 2022 OF A 3-YEAR GRANT (TOTAL FUNDING COMMITMENT OF $300,000) HARNESSING VIRAL MIMICRY TO TARGET H3K27M DRIVEN PEDIATRIC HIGH GRADE GLIOMA ST. JUDE MEDICAL CENTER $150,000 FUNDED IN 2022 OF A 2-YEAR EARLY CAREER DEVELOPMENT GRANT (TOTAL FUNDING COMMITMENT OF $250,000) IDENTIFYING BRAINSTEM GLIOMA SUBTYPES THAT CAN BE RADIOSENSITIZED BY ATM INHIBITION - DUKE UNIVERSITY $100,000 FUNDED IN 2022 OF A 3-YEAR EARLY CAREER DEVELOPMENT GRANT (TOTAL FUNDING COMMITMENT OF $300,000) MAINTENANCE OF DIPG BLOOD-BRAIN BARRIER INTEGRITY BY ANGIOPOLETIN1 - CHILDREN'S HOSPITAL OF CINCINNATI - $100,000 FUNDED IN 2022 OF A 3-YEAR EARLY CAREER DEVELOPMENT GRANT (TOTAL FUNDING COMMITMENT OF $300,000) DATA PROJECT INVESTIGATING HGG IMMUNE MICROENVIRONMENT DURING TUMORIGENESIS AND TREATMENT IN PRIMARY MOUSE MODELS - DUKE UNIVERSITY MEDICAL CENTER $52,946 FUNDED IN 2022 OF A 1-YEAR EARLY CAREER DEVELOPMENT GRANT INTERROGATING ANTI-TUMOR T CELLS TO DEVELOP ADAPTIVE ACT IMMUNOTHERAPY FOR PEDIATRIC HIGH GRADE GLIOMA UNIVERSITY OF PITTSBURGH $150,000 FUNDED IN 2022 OF A 3-YEAR GRANT (TOTAL FUNDING COMMITMENT OF $450,000 MADE IN PARTNERSHIP WITH THE BRAIN TUMOR FUNDERS' COLLABORATIVE) PART III LINE 4A CONTINUED CLINICAL TRIALS: WITH THE EASING OF COVID-19 PRECAUTIONS IN THE CLINICS, 2022 SAW A RAPID INCREASE IN CLINICAL TRIAL ENROLLMENT. THESE TRIALS CHALLENGE 'GOLD STANDARD' TREATMENTS AND EXPLORE NEW POSSIBILITIES FOR CHILDREN WHO HAVE RUN OUT OF OTHER EFFECTIVE TREATMENT OPTIONS. THE FOLLOWING PBTF-SUPPORTED CLINICAL TRIALS WERE ACTIVE IN 2022: PNOC021-COMBINATORIAL CLINICAL TRIAL - UNIVERSITY OF CALIFORNIA, SAN FRANCISCO AS PART OF THE PEDIATRIC PACIFIC NEURO ONCOLOGY CONSORTIUM - MULTI-YEAR AWARD TOTALING $300,000 PHASE I/II TRIAL OF MEK162 IN LOW GRADE GLIOMA - DANA FARBER CANCER INSTITUTE (DFCI) - MULTI-YEAR AWARD TOTALING $249,500 PHASE 1 TRIAL OF MARIZOMIB ALONE AND IN COMBINATION WITH PANOBINOSTAT FOR CHILDREN WITH DIFFUSE INTRINSIC PONTINE GLIOMA - PROJECT OPEN DIPG CONTINUATION OF $16,667 GRANT AWARDED IN 2019 THROUGH A NO-COST EXTENSION; STUDY REOPENED IN 2022 AFTER PAUSING FOR ENROLLMENT IN 2020 AND 2021 DUE TO COVID-19 PBTC 0533 HCQ TRIAL PEDIATRIC BRAIN TUMOR CONSORTIUM MULTI-YEAR AWARD TOTALING $350,000 ACNS1833 PHASE III CLINICAL TRIAL CHILDREN'S ONCOLOGY GROUP MULTI-YEAR AWARD TOTALING $400,000 SIOP LOGGIC PHASE III CLINICAL TRIAL GERMAN CANCER RESEARCH INSTITUTE MULTI-YEAR AWARD TOTALING $428,000 ($177,000 DISTRIBUTED IN 2022) GLOBAL TRAINING/EDUCATION: PBTF'S SUPPORT FOR ACADEMIC-DRIVEN INTERNATIONAL RESEARCH MEETINGS SPURS INNOVATION AND FACILITATES THE SHARING OF TIMELY RESEARCH DISCOVERIES ACROSS DISCIPLINES, SUB-SPECIALTIES, COUNTRIES, AND INSTITUTIONS: O INTERNATIONAL SOCIETY OF PEDIATRIC NEUROONCOLOGY'S (ISPNO) - THE BI-ANNUAL ISPNO MEETING OFFERS A CRITICAL CORNERSTONE FOR THE GLOBAL RESEARCH COMMUNITY TO CONNECT AND SHARE REAL TIME DATA AND RESULTS, BUILD RELATIONSHIPS AND BREAK DOWN SILOS IN ORDER TO ACCELERATE THE PACE OF CUTTING-EDGE RESEARCH. PBTF PROVIDED A $40,000 SPONSORSHIP GRANT FOR THE 2022 MEETING. O BRAIN TUMOR EPIDEMIOLOGY CONFERENCE (BTEC): PBTF PROVIDED A $2000 SPONSORSHIP GRANT FOR THIS 2022 MEETING FOCUSED ON PEDIATRIC BRAIN TUMOR EPIDEMIOLOGY. PART III LINE 4A CONTINUED 2022 FAMILY SUPPORT PROGRAM HIGHLIGHTS: THE EMOTIONAL AND FINANCIAL BURDEN OF A CHILD'S BRAIN TUMOR DIAGNOSIS ON FAMILIES IS PROFOUND. TO EASE THIS BURDEN, PBTF PROVIDES PROGRAMS AND SUPPORT THAT HAVE BEEN DEVELOPED IN PARTNERSHIP WITH FAMILIES, RESEARCHERS, AND HEALTH CARE EXPERTS. IN 2022, WE STRENGTHENED OUR FOCUS ON REACHING MORE FAMILIES IN MORE MEANINGFUL WAYS AND CREATING A TRUE COMMUNITY OF SUPPORT: PBTF CREATED AND IMPLEMENTED A PATIENT FAMILY JOURNEY TOOL IN 2022 THAT MAPS THE PHASES OF THE PEDIATRIC BRAIN TUMOR JOURNEY AND THE UNIQUE STRESSORS AND NEEDS THAT PATIENTS, SURVIVORS, CAREGIVERS, AND SIBLINGS EXPERIENCE DURING EACH PHASE. THIS GUIDE FOR PROGRAM DECISION-MAKING AND ASSESSMENT HAS HELPED IMPROVE HOW WE MEET FAMILIES WHERE THEY ARE IN THEIR JOURNEY. PBTF'S BUTTERFLY FUND PROVIDED $424,998.93 OF EMERGENCY FINANCIAL RELIEF IN 2022, WITH AN AVERAGE OF $1116 PROVIDED PER FAMILY. HOUSING CONTINUED TO BE FAMILIES' MOST SUBSTANTIAL NEED, WITH 49.3% OF ASSISTANCE SUPPORTING RENT AND MORTGAGE PAYMENTS. GROCERY AND GAS CARDS SAW A 46.5% YEAR-OVER-YEAR INCREASE DUE TO THE STEEP RISE IN COSTS FOR THESE EXPENSES. IN ADDITION TO THE FINANCIAL RELIEF PROVIDED THROUGH THE BUTTERFLY FUND, PBTF MOBILIZED TO IDENTIFY AREAS WHERE INCREASED TRANSPORTATION AND TRAVEL COSTS MOST SEVERELY IMPACTED PATIENT FAMILIES AND UNDERTOOK A FUNDRAISING CAMPAIGN TO PROVIDE GAS CARDS TO FAMILIES AT 7 HOSPITALS IN THOSE AREAS. THESE GIFT CARDS WERE DISTRIBUTED TO HOSPITAL PARTNERS NOT RECEIVING SUPPORT FROM THE BUTTERFLY FUND, WIDENING THE REACH OF PBTF'S FINANCIAL ASSISTANCE. VIRTUAL SUPPORT GROUPS BECAME A PRIMARY FOCUS IN PBTF'S 2022 PROGRAMMING, WITH THE CREATION OF GROUPS FOCUSED ON BEREAVED FAMILIES, FAMILIES OF CHILDREN DIAGNOSED WITHIN THE PAST 5 YEARS, AND SPANISH-SPEAKING FAMILIES. WE ALSO EXPANDED OUR PEER TO PEER MENTOR PROGRAM, RESPONDING TO THE GROWING NEED FOR MORE BEREAVED PARENT AND SURVIVOR MENTORS BY INCREASING RECRUITMENT EFFORTS AND STREAMLINING THE PROGRAM'S APPLICATION AND TRAINING PROCESS. FAMILY CAMPS RESUMED IN CALIFORNIA FOLLOWING A 2-YEAR HIATUS DUE TO COVID-19. 68 FAMILY MEMBERS ATTENDED TWO CAMPS, ONE FOR BEREAVED FAMILIES AND ONE FOR CURRENT PATIENT FAMILIES. SUPPORT WAS PROVIDED BY PBTF'S PARTNER MENTAL HEALTH PROFESSIONALS IN THE AREA, OFFERING GROUP SESSIONS FOR PARENTS/CAREGIVERS, SIBLINGS, AND PATIENTS. TOPICS INCLUDED RESILIENCY IN THE BRAIN TUMOR JOURNEY, ENDOCRINE ISSUES, AND NAVIGATING FRIENDSHIPS AFTER MY CHILD DIES. PBTF'S VS. CANCER PROGRAM FUNDED MORE THAN $190K IN GRANTS PROVIDED TO PEDIATRIC ONCOLOGY PROGRAMS ACROSS THE UNITED STATES. THIS FUNDING SAFEGUARDED PSYCHOSOCIAL SUPPORT THAT'S IMPERATIVE TO FAMILIES' WELL-BEING, SUCH AS: O UNIVERSITY OF MASSACHUSETTS MEMORIAL MEDICAL CENTER'S ANIMAL ASSISTED THERAPY (AAT) PROGRAM. THROUGH THIS PROGRAM, FULL-TIME CANINE ASSISTANTS ARE TRAINED TO MEET THE NEEDS OF PEDIATRIC PATIENTS, INCLUDING PARTICIPATING IN OR DEMONSTRATING ACTIVITIES TO REDUCE FEAR CHILDREN MAY HAVE. THESE DOGS CAN SHOW A CHILD HOW TO LIE ON AN MRI TABLE OR DEMONSTRATE THAT BLOOD PRESSURE CUFFS DON'T HURT. FOR CHILDREN WITH GOALS OF GETTING OUT OF BED OR WALKING, THE PROGRAM'S FULL-TIME DOG VALENTINA PROVIDES INCENTIVE AND INSPIRATION, AS WELL AS DISTRACTION FROM DISCOMFORT. WHEN VISITATION IS LIMITED AND VOLUNTEERS AREN'T ALLOWED IN, THE PROFESSIONAL CANINE ASSISTANTTHROUGH MORE STRINGENT INFECTION CONTROL PROTOCOLS AND COMPLETE KNOWLEDGE OF THE DOG'S HEALTH AND ENVIRONMENTIS STILL ABLE TO WORK WITH PATIENTS AND REDUCE THE IMPACT OF ISOLATION. O HASBRO CHILDREN'S HOSPITAL'S "FIGHT CELEBRATION" PATIENT PROM. THIS EVENING INCLUDES DINNER, DANCING, AND OTHER ACTIVITIES THAT OFFER FAMILIES A SPACE TO STEP BACK FROM TREATMENT AND CONNECT WITH ONE ANOTHER WHILE CREATING POSITIVE AND LASTING MEMORIES. FAMILIES BENEFIT FROM SOCIAL ENGAGEMENT WITH EACH OTHER AND HOSPITAL STAFF OUTSIDE OF A CLINIC SETTING AND A SPACE FOR "NORMALCY", ALL IMPORTANT TO THE MENTAL WELL-BEING OF FAMILIES IN THIS JOURNEY. THROUGH THESE AND OTHER FAMILY SUPPORT INITIATIVES, PBTF INCREASED OUR REACH TO NEW FAMILIES BY 66.7% YEAR-OVER-YEAR. 48.6% OF THOSE FAMILIES WERE WITHIN THE FIRST YEAR OF DIAGNOSIS, THE PHASE IDENTIFIED IN THE FAMILY JOURNEY MAP AS HAVING THE GREATEST NEEDS. 2022 ADVOCACY HIGHLIGHTS: WHILE RESEARCHERS SEARCH FOR A CURE FOR PEDIATRIC BRAIN TUMORS, IMMEDIATE CHANGE THAT CAN BENEFIT PATIENTS AND THEIR FAMILIES IS NEEDED. PBTF'S GRASSROOTS ADVOCACY FOCUSES ON PASSING LEGISLATION THAT BENEFITS FAMILIES AND CHANGING STATE-LEVEL HEALTH POLICY SO PEDIATRIC BRAIN TUMOR RESEARCH AND TREATMENT RECEIVE THE ATTENTION AND FUNDING THEY DESERVE. IN 2022, WE INCREASED OUR WORK WITH FEDERAL AND STATE LEGISLATORS AND POLICY MAKERS TO INFLUENCE MEANINGFUL CHANGE THAT ADDRESSES TWO URGENT NEEDS: MORE FUNDING FOR PEDIATRIC BRAIN TUMOR RESEARCH AND POLICIES THAT IMPROVE HEALTH OUTCOMES AND REDUCE THE FINANCIAL BURDEN ON FAMILIES. THESE POLICIES INCLUDE PAID FAMILY LEAVE, ACCESS TO CARE, PALLIATIVE CARE, AND CLINICAL TRIAL ACCESS. OUR 2022 EFFORTS WERE INSTRUMENTAL IN RECRUITING CO-SPONSORS IN THE HOUSE AND SENATE FOR THE STAR REAUTHORIZATION ACT, WHICH WAS SIGNED INTO LAW, AND THE GABRIELLA MILLER KIDS FIRST PEDIATRIC RESEARCH PROGRAM, WHICH RECEIVED AN ADDITIONAL YEAR OF FUNDING. INFORMED BY THE RESULTS OF THE LATEST CBTRUS STATISTICAL REPORT, WE ALSO BEGAN SPEARHEADING EFFORTS IN STATES ACROSS THE COUNTRY TO INCLUDE LANGUAGE ABOUT PEDIATRIC CANCER IN CENTERS FOR DISEASE CONTROL-MANDATED STATE CANCER PLANS. THESE PLANS ACT AS A BLUEPRINT FOR ADDRESSING THE BURDEN OF CANCER IN A SPECIFIC AREA. WHILE ALL PLANS FOCUS ON ADULT CANCERS, FEW THOUGHTFULLY ADDRESS THE UNIQUE NEEDS OF CHILDREN AND THEIR FAMILIES. IN 2022, WE EVALUATED THE QUALITY OF STATES' CANCER PLANS IN RELATION TO PEDIATRIC PATIENTS AND BEGAN ORGANIZING STATE ADVOCACY WORKGROUPS TO ADDRESS THE URGENT NEED FOR PLAN UPDATES. FORM 990, PART VI, SECTION A, LINE 1A THE BOARD OF DIRECTORS MAY, BY RESOLUTION, DESIGNATE TWO (2) OR MORE DIRECTORS TO CONSTITUTE AN EXECUTIVE COMMITTEE, WHICH COMMITTEE, TO THE EXTENT PROVIDED IN SUCH RESOLUTION, SHALL HAVE AND MAY EXERCISE ALL OF THE AUTHORITY OF THE BOARD OF DIRECTORS IN THE MANAGEMENT OF THE CORPORATION EXCEPT AS OTHERWISE REQUIRED BY LAW. ALL MEMBERS OF THE EXECUTIVE COMMITTEE SHALL BE DIRECTORS OF THE CORPORATION. VACANCIES IN THE MEMBERSHIP OF THE COMMITTEE SHALL BE FILLED BY THE BOARD OF DIRECTORS AT ANY ANNUAL OR SPECIAL MEETING OF THE BOARD OF DIRECTORS. THE EXECUTIVE COMMITTEE SHALL KEEP REGULAR MINUTES OF ITS PROCEEDINGS AND REPORT THE SAME TO THE BOARD. FORM 990, PART VI, SECTION B, LINE 11B THE RETURN WAS PREPARED BY AN INDEPENDENT ACCOUNTANT WITH ASSISTANCE AND OVERSIGHT BY MANAGEMENT. THE CFO AND PRESIDENT REVIEWED THE RETURN WITH THE PREPARERS AT MULTIPLE STAGES OF COMPLETION. UPON RECEIVING A FINAL DRAFT, THE RETURN WAS PRESENTED AT A SCHEDULED BOARD MEETING. THE RETURN WAS PRESENTED TO THE FULL BOARD BY A MEMBER OF THE ACCOUNTING FIRM AND THE MANAGEMENT OF THE ORGANIZATION, AND A PERIOD OF TIME FOR QUESTIONS AND COMMENTS WAS ALLOWED. FORM 990, PART VI, SECTION B, LINE 12C ALL FINANCIAL TRANSACTIONS (BOTH REVENUE AND EXPENSE) ARE CONDUCTED WITH THE KNOWLEDGE AND/OR APPROVAL OF EITHER THE PRESIDENT/CEO OR THE CFO. THESE TRANSACTIONS ARE REVIEWED FOR ANY POTENTIAL CONFLICTS OF INTERESTS. ANY ISSUES ARE BROUGHT TO THE ATTENTION OF THE EXECUTIVE COMMITTEE. FORM 990, PART VI, SECTION B, LINE 15 THE BOARD'S EXECUTIVE COMMITTEE DETERMINES COMPENSATION AND BENEFITS FOR THE PRESIDENT/CEO AFTER REVIEWING THE MOST CURRENT GUIDESTAR NONPROFIT COMPENSATION REPORT, OTHER COMPARABLE DATA, SCOPE OF RESPONSIBILITY, SIZE OF ORGANIZATION, RESPONSIBILITY AND BUDGET TO DETERMINE THE REASONABLENESS OF THE SALARY. FORM 990, PART VI, SECTION C, LINE 18 RECENT FILINGS OF THE FORM 990 ARE AVAILABLE ONLINE AT CURETHEKIDS.ORG, GUIDESTAR, AND CHARITY NAVIGATOR. FORM 990, PART VI, SECTION C, LINE 19 THE FOUNDATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS AVAILABLE THROUGH INSPECTION AT THE ADMINISTRATIVE OFFICE IN ASHEVILLE, NC. ADDITIONALLY, THESE DOCUMENTS ARE MADE AVAILABLE TO ALL STATE GOVERNMENTS THAT REQUIRE ANNUAL FILING OF CHARITABLE ORGANIZATIONS. FORM 990, PART XII, LINE 2C: THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR. FORM 990 HEADER - AMENDED RETURN THE FORM 990 WAS AMENDED TO RECORD THE ERC CREDIT GRANT TO MATCH THE ORGANIZATION'S AUDITED FINANCIAL STATEMENTS. THE FOLLOWING PARTS OF THE RETURN WERE IMPACTED: PART VIII LINE 1 - ADJUSTED TO INCLUDED THE CREDIT PART X ASSETS - ADJUSTED TO REFLECT THE RECEIVABLE PART X NET ASSETS - INCREASED TO REFLECT THE IMPACT OF THE CREDIT SCHEDULE A PART II LN 1 - ADJUSTED TO REFLECT THE ERC CREDIT SCHEDULE B - ERC GRANT REPORTED ON SCHEDULE B SCHEUDLE D PART XI - ADJUSTED TO REFLECT THE CREDIT RECORDED AS INCOME.