Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for instructions and the latest information.
| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
|
Total |
||||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 5,643,146 | 9,927,494 | 6,471,860 | 3,836,629 | 5,655,898 | 31,535,027 |
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.... | ||||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | ||||||
| 4 | Total. Add lines 1 through 3 | 5,643,146 | 9,927,494 | 6,471,860 | 3,836,629 | 5,655,898 | 31,535,027 |
| 5 | The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f) .. | 749,329 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 30,785,698 | |||||
Calendar year
(or fiscal year beginning in)
![]() |
(a) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 5,643,146 | 9,927,494 | 6,471,860 | 3,836,629 | 5,655,898 | 31,535,027 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 109,546 | 16,620 | 45,248 | 14,534 | 21,568 | 207,516 |
| 9 | Net income from unrelated business activities, whether or not the business is regularly carried on.. | ||||||
| 10 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. | ||||||
| 11 | Total support. Add lines 7 through 10 | 31,742,543 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . | ||||||
| 2 | Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose | ||||||
| 3 | Gross receipts from activities that are not an unrelated trade or business under section 513 ..... | ||||||
| 4 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf... | ||||||
| 5 | The value of services or facilities furnished by a governmental unit to the organization without charge | ||||||
| 6 | Total. Add lines 1 through 5 | ||||||
| 7a | Amounts included on lines 1, 2, and 3 received from disqualified persons | ||||||
| b | Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year. | ||||||
| c | Add lines 7a and 7b.. | ||||||
| 8 | Public support. (Subtract line 7c from line 6.) | ||||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2017 | (b) 2018 | (c) 2019 | (d) 2020 | (e) 2021 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | ||||||
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | ||||||
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | ||||||
| 11 | Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | ||||||
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
||||
| 1 | Net short-term capital gain | 1 | ||||
| 2 | Recoveries of prior-year distributions | 2 | ||||
| 3 | Other gross income (see instructions) | 3 | ||||
| 4 | Add lines 1 through 3 | 4 | ||||
| 5 | Depreciation and depletion | 5 | ||||
| 6 | Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) | 6 | ||||
| 7 | Other expenses (see instructions) | 7 | ||||
| 8 | Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) | 8 | ||||
| Section B - Minimum Asset Amount | (A) Prior Year |
(B) Current Year (optional) |
||||
| 1 | Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): | 1 | ||||
| a | Average monthly value of securities | 1a | ||||
| b | Average monthly cash balances | 1b | ||||
| c | Fair market value of other non-exempt-use assets | 1c | ||||
| d | Total (add lines 1a, 1b, and 1c) | 1d | ||||
| e |
Discount claimed for blockage or other factors (explain in detail in Part VI): |
|||||
| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by 0.035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | 1 | |
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
2 | |
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | 3 | |
| 4 Amounts paid to acquire exempt-use assets | 4 | |
| 5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) | 5 | |
| 6 Other distributions (describe in Part VI). See instructions | 6 | |
| 7Total annual distributions. Add lines 1 through 6. | 7 | |
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
8 | |
| 9 Distributable amount for 2021 from Section C, line 6 | 9 | |
| 10 Line 8 amount divided by Line 9 amount | 10 | |
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2021 |
(iii) Distributable Amount for 2021 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2021 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2021 (reasonable cause required-- explain in Part VI). See instructions. |
||||
| 3 Excess distributions carryover, if any, to 2021: | ||||
| a From 2016....... | ||||
| b From 2017....... | ||||
| c From 2018....... | ||||
| d From 2019....... | ||||
| e From 2020....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2021 distributable amount | ||||
|
i
Carryover from 2016 not applied (see instructions) |
||||
| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2021 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2021 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2021, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
||||
|
6
Remaining underdistributions for 2021. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
||||
|
7 Excess distributions carryover to 2022. Add lines 3j and 4c. |
||||
| 8 Breakdown of line 7: | ||||
| a Excess from 2017..... | ||||
| b Excess from 2018..... | ||||
| c Excess from 2019..... | ||||
| d Excess from 2020..... | ||||
| e Excess from 2021..... | ||||
| Facts And Circumstances Test |
|---|
| Return Reference | Explanation |
|---|
| Software ID: | |
| Software Version: |
Attach to Form 990 or 990-EZ.
Go to www.irs.gov/Form990 for the latest information.
| Return Reference | Explanation |
|---|---|
| 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. |
| Software ID: | |
| Software Version: |