2022-11-15T20:15:29-06:00 2021-12-31 873707167 CBIZ MARKS PANETH LLC 685 THIRD AVENUE NEW YORK NY 10017 990 2021-01-01 132298956 CHILDREN'S TUMOR FOUNDATION CHIL 2123446633 697 3RD AVENUE 418 NEW YORK NY 10017 ANNETTE BAKKER PHD PRESIDENT 2123446633 2022-11-14 1 ANNETTE BAKKER PHD 999009999 MAGDALENA CZERNIAWSKI CPA P00535099 2125038800 2022-11-14 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z X ANNETTE BAKKER PHD 697 3RD AVENUE 418 NEW YORK NY 10017 19779459 0 X WWW.CTF.ORG X 1978 NY THE CHILDREN'S TUMOR FOUNDATION IS DEDICATED TO ENDING NEUROFIBROMATOSIS (NF). OUR MISSION IS TO: A.) FUND RESEARCH, B.) INCREASE PUBLIC AWARENESS, C.) SUPPORT PATIENTS AND FAMILIES, D.) ENCOURAGE ESTABLISHMENT OF NF CLINICS. 18 18 43 1000 0 0 11715519 15156568 929324 1463602 120799 96024 66304 63384 12831946 16779578 2913694 2298320 0 0 4309382 4221535 0 0 865140 3170544 3898582 10393620 10418437 2438326 6361141 23094143 29600801 2555328 2305001 20538815 27295800 X OUR MISSION: DRIVE RESEARCH, EXPAND KNOWLEDGE, AND ADVANCE CARE FOR THE NF COMMUNITY. OUR VISION: END NF. 0 0 6025525 2298320 1539709 RESEARCH - THE CHILDREN'S TUMOR FOUNDATION SUPPORTS NF RESEARCH THROUGH A RANGE OF FUNDING MECHANISMS. OUR INVESTMENTS IN RESEARCH ARE THREE-FOLD: 1) TO ATTRACT TALENTED INVESTIGATORS TO NF RESEARCH; 2) TO SUPPORT INNOVATIVE RESEARCH; AND 3) TO FOSTER COLLABORATIVE EFFORTS TO FIND TREATMENTS AND CURES FOR NEUROFIBROMATOSIS. THE FOUNDATION HAS BEEN AT THE FOREFRONT OF KEY ADVANCES IN NF RESEARCH INCLUDING FUNDING THE LABORATORIES THAT DISCOVERED THE NF1 AND NF2 GENES, SUPPORTING GROUNDBREAKING CLINICAL TRIALS, AND ESTABLISHING THE FIRST NATIONWIDE NF CLINIC NETWORK AND NF PATIENT REGISTRY. THE FOUNDATION SPONSORS AN ANNUAL SCIENTIFIC CONFERENCE WHICH BRINGS RESEARCHERS TOGETHER TO DISCUSS THE LATEST SCIENTIFIC DEVELOPMENTS RELATED TO NF. ADDITONALLY, OUR PORGRAMS ARE DESIGNED TO INTEGRATE WITH AND SUPPORT LARGER FEDERALLY FUNDED PROJECTS THROUGH THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) AND NIH. 2575506 PUBLIC EDUCATION AND PATIENT SUPPORT - THE CHILDREN'S TUMOR FOUNDATION ENGAGES IN PUBLIC EDUCATION THROUGH ITS WEBSITE, QUARTERLY NEWSLETTERS, MEDIA COVERAGE, AND ITS NATIONAL PROGRAMS. THROUGH OUR NF ENDURANCE AND NF WALK PROGRAMS, THE FOUNDATION HIGHLIGHTS NF HEROES AND THEIR TRIUMPHANT SPIRITS. THE FOUNDATION ALSO SPONSORS BENEFIT DINNERS AND REGIONAL AND LOCAL EVENTS TO PROMOTE AWARENESS. THE CHILDREN'S TUMOR FOUNDATION IS DEDICATED TO SUPPORTING PATIENTS WITH NF AS WELL AS THEIR FAMILY MEMBERS. THROUGH THE NF CLINIC NETWORK AND THE ANNUAL NF FORUM, THE FOUNDATION BRINGS RESEARCHERS, PROVIDERS, AND FAMILIES TOGETHER TO DISCUSS DEVELOPMENTS IN TREATMENTS. THE FOUNDATION ALSO SPONSORS THE ANNUAL NF CAMP WHICH BRINGS NF TEENS TOGETHER FOR ONE WEEK TO ENJOY THE SUPPORT AND FELLOWSHIP OF THEIR PEERS. REGIONAL SYMPOSIA ARE ALSO HELD THROUGHOUT THE YEAR. 8601031 1 1 0 1 0 0 0 0 0 0 1 0 0 0 1 1 0 1 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 55 0 1 43 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 18 18 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 NY AK AL AR AZ CA CO CT DC DE FL GA HI IA ID IL IN KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY X ANNETTE BAKKER PRESIDENT 2123446633 370 LEXINGTON AVE STE 2100 NEW YORK NY 10017 AMY BOULAS BOARD MEMBER (OUTGOING) 1.00 X 0 0 0 ANITA GRIBBEN BOARD MEMBER 1.00 X 0 0 0 BRUCE KORF BOARD MEMBER (OUTGOING) 1.00 X 0 0 0 CAROL KALAGHER BOARD MEMBER 1.00 X 0 0 0 CAROLYN SETLOW BOARD MEMBER 1.00 X 0 0 0 DANIEL ALTMAN BOARD MEMBER 1.00 X 0 0 0 DANIEL GILBERT BOARD MEMBER 1.00 X 0 0 0 ED STERN BOARD MEMBER 1.00 X 0 0 0 FRANK HAUGHTON BOARD MEMBER 1.00 X 0 0 0 GABRIEL GROISMAN VICE CHAIR 1.00 X X 0 0 0 JOHN GOLFINOS BOARD MEMBER 1.00 X 0 0 0 KENNETH RUDD BOARD MEMBER 1.00 X 0 0 0 LAURA PERFETTI BOARD MEMBER (OUTGOING) 1.00 X 0 0 0 LINDA MARTIN CHAIR EMERITUS 1.00 X 0 0 0 LIZ RODBELL BOARD MEMBER 1.00 X 0 0 0 MICHAEL PETERSON BOARD MEMBER 1.00 X 0 0 0 NATE WALKER BOARD MEMBER 1.00 X 0 0 0 RANDALL STANICKY TREASURER 1.00 X X 0 0 0 RB HARRISON BOARD MEMBER 1.00 X 0 0 0 RICHARD HORVITZ CHAIR EMERITUS 1.00 X 0 0 0 RICHARD SOLL BOARD MEMBER 1.00 X 0 0 0 ROBERT BRAININ BOARD MEMBER 1.00 X 0 0 0 SALLY GOTTESMAN BOARD MEMBER 1.00 X 0 0 0 SCOTT PLOTKIN BOARD MEMBER 1.00 X 0 0 0 SIMONE MANSO BOARD MEMBER 1.00 X 0 0 0 STEVEN MCKENZIE BOARD MEMBER 1.00 X 0 0 0 STUART SUNA BOARD MEMBER 1.00 X 0 0 0 SUZANNE EARLE BOARD MEMBER 1.00 X 0 0 0 TRACY GALLOWAY CHAIR 1.00 X X 0 0 0 WADE CLAPP BOARD MEMBER 1.00 X 0 0 0 ANNETTE BAKKER PRESIDENT 37.50 X 354738 0 36813 SARAH BOURNE VP, FINANCE AND OPERATIONS 37.50 X 152105 0 5588 BARBARA GALLAGHER VICE PRESIDENT OF DEV. 37.50 X 149444 0 34415 MICHELE PRZYPYSZNY CHIEF ADVANCEMENT OFFICER 37.50 X 253400 0 18686 PATRICE PANCZA VP, EXTERNAL RELATIONS 37.50 X 129235 0 13115 SALVATORE LA ROSA CHIEF SCIENTIFIC OFFICER 37.50 X 229334 0 18481 SIMON VUKELJ CHIEF MARKETING OFFICER 37.50 X 219900 0 26752 1488156 0 153850 10 0 1 0 SQUIRE PATTON BOGGS PO BOX 643051 CINCINNATI OH 45264 LOBBYING/ADVOCACY 351389 SITUATION INTERACTIVE 469 7TH AVENUE SUITE 1300 NEW YORK NY 10018 MARKETING SERVICES 132949 3 6703 1715102 1077026 12357737 676761 15156568 PARTICIPANT REVENUE 900099 1463602 1463602 1463602 89863 89863 2905819 2899658 6161 6161 6161 87500 1715102 100223 -12723 -12723 53264 0 53264 53264 RETURN OF UNUSED GRANTS 900099 22843 22843 22843 16779578 1539709 0 83301 X 2041051 2041051 257269 257269 549245 337163 121810 90272 2881482 2522957 173121 185404 127309 99780 16010 11519 378186 289822 52010 36354 285313 217465 39461 28387 91003 91003 270000 270000 8724 8724 1347670 1048795 121207 177668 42555 40711 478 1366 318203 227310 33151 57742 409839 290804 68479 50556 155487 86426 45511 23550 77345 57792 8007 11546 600434 448071 47080 105283 91230 51092 26225 13913 33416 18760 9583 5073 DUES AND OTHER FEES 192948 124603 41334 27011 APPAREL 144404 106542 14408 23454 FOOD AND BEVERAGE 53340 39359 4270 9711 BAD DEBT EXPENSE 25000 25000 36984 25259 5394 6331 10418437 8601031 952266 865140 4598820 3376893 11154589 15249203 2615529 4264500 253760 47113 1270 12979 393713 371447 667699 450468 205313 217231 3825616 5979457 45533 81978 23094143 29600801 626569 700070 1384039 1326906 348920 82225 195800 195800 2555328 2305001 X 9394222 13479621 11144593 13816179 20538815 27295800 23094143 29600801 6361141 474548 -78704 0 X X 0 1 X 1 0 X 10817315 11939258 16140037 11715519 15156568 65768697 10817315 11939258 16140037 11715519 15156568 65768697 12036393 53732304 104412 172362 200112 121577 89863 688326 953426 606656 328020 66304 163607 2118013 68575036 3731727 0.78360 0.81320 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS INCOME - 2017 AMOUNT: $ 491,993. 2018 AMOUNT: $ 6,844. 2019 AMOUNT: $ 13,238. FUNDRAISING - 2017 AMOUNT: $ 461,433. 2018 AMOUNT: $ 111,000. 2019 AMOUNT: $ 82,500. 2021 AMOUNT: $ 87,500. RETURN OF UNUSED GRANTS - 2018 AMOUNT: $ 456,233. 2019 AMOUNT: $ 164,509. 2020 AMOUNT: $ 33,381. 2021 AMOUNT: $ 22,843. BAD DEBT RECOVERY - 2019 AMOUNT: $ 20,000. SALE OF INVENTORY - 2018 AMOUNT: $ 32,579. 2019 AMOUNT: $ 47,773. 2020 AMOUNT: $ 32,923. 2021 AMOUNT: $ 53,264. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 0 0 0 1 270000 0 0 270000 0 PART II-B, LINE 1: THE AMOUNT OF $270,000 SPENT ON LOBBYING WAS FOR THE SOLE PURPOSE OF PURSUING THE MISSION OF THE ORGANIZATION. THIS WAS PAID TO OUTSIDE LOBBYING ENTITY SQUIRE PATTON BOGGS. 29312 29312 0 638387 421156 217231 217231 ASSETS HELD IN TRUST 195800 195800 X 17597112 474548 158500 132987 766035 16831077 8724 -60223 -51499 16779578 10721539 158500 153326 311826 10409713 8724 8724 10418437 PART X, LINE 2: THE FOUNDATION HAS NO UNCERTAIN TAX POSITIONS AS OF DECEMBER 31, 2021, IN ACCORDANCE WITH ACCOUNTING STANDARDS CODIFICATION ("ASC") TOPIC 740, WHICH PROVIDES STANDARDS FOR ESTABLISHING AND CLASSIFYING ANY TAX PROVISIONS FOR UNCERTAIN TAX POSITIONS. PART XI, LINE 2D - OTHER ADJUSTMENTS: REVENUE FROM RELATED ENTITY 132,987. PART XI, LINE 4B - OTHER ADJUSTMENTS: DIRECT FUNDRAISING EXPENSES -60,223. PART XII, LINE 2D - OTHER ADJUSTMENTS: EXPENSES FROM RELATED ENTITY 93,103. DIRECT FUNDRAISING EXPENSES 60,223. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 RESEARCH GRANTS TO SCIENTISTS RESEARCH GRANTS 175629 NORTH AMERICA, CANADA, AND MEXICO 0 0 RESEARCH GRANTS TO SCIENTISTS RSEARCH GRANTS 12640 RUSSIA AND NEIGHBORING STATES 0 0 RESEARCH GRANTS TO SCIENTISTS RSEARCH GRANTS 64000 0 0 0 0 0 0 252269 0 252269 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES RESEARCH - 10000 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH EVENT -YIA 149886 WIRE 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH - SYNODOS 23793 WIRE 0 RUSSIA AND NEIGHBORING STATES RESEARCH EVENT -YIA 64000 WIRE 0 4 0 0 0 0 0 0 PART I, LINE 2: RESEARCHERS ARE REQUIRED TO SEND IN PROGRESS REPORTS. THESE REPORTS ARE REVIEWED BY THE RESEARCH DEPARTMENT STAFF. MANY OF THE GRANTS ARE CONTINGENT ON THE RESEARCHERS MEETING CERTAIN MILESTONES WHICH ARE OUTLINED IN THEIR PROGRESS REPORTS. PART III ACCOUNTING METHOD: 2021 NY GALA 1802602 1715102 87500 100223 1802602 1715102 87500 100223 100223 -12723 1 AUGUSTA UNIVERSITY 1120 15TH STREET AUGUSTA GA 30912 586002053 501(C)(3) 85000 0 RESEARCH - DDI CHILDREN'S HOSPITAL OF PHILADELPHIA 3501 CIVIC CENTER BLVD PHILADELPHIA PA 19104 232237932 501(C)(3) 279576 0 RESEARCH - OPG & DDI CHILDREN'S HOSPITAL OF WISCONSIN 9000 W WISCONSIN AVE MILWAUKEE WI 53226 390812532 501(C)(3) 6000 0 RESEARCH - NF CLINIC NETWORK FOX CHASE CANCER CENTER 333 COTTMAN AVE PHILADELPHIA PA 19111 232003072 501(C)(3) 40000 0 RESEARCH - DDI INDIANA UNIVERSITY 1044 W WALNUT STREET INDIANAPOLIS IN 46202 356018940 501(C)(3) 135000 0 RESEARCH - DDI & CONTRACT AWARDS JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD BALTIMORE MD 21211 520595110 501(C)(3) 119300 0 RESEARCH -YIA & NF CLINIC NETWORK MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 21140 041564655 501(C)(3) 75000 0 RESEARCH - CONTRACT AWARD, DDI & CRA OREGON STATE UNIVERSITY 4238 SW RESEARCH WAY CORVALLIS OR 97333 936022772 501(C)(3) 89000 0 RESEARCH - YIA PRECISION BIOSERVICES INC 8425 PROGRESS DR FREDERICK MD 21701 352463752 501(C)(3) 11094 0 RESEARCH - OPG SAGE BIONETWORKS 2901 3RD AVE STE 330 SEATTLE WA 98121 264489946 501(C)(3) 480105 0 RESEARCH - CONTRACT AWARDS UNIVERSITY OF ALABAMA BIRMINGHAM 1720 2ND AVE BIRMINGHAM AL 35294 636001138 501(C)(3) 152807 0 RESEARCH - CONTRACT AWARD UNIVERSITY OF IOWA 12902 MAGNOLIA DRIVE TAMPA FL 33612 426004813 501(C)(3) 89000 0 RESEARCH - YIA UNIVERSITY OF MINNESOTA 200 OAK ST SE STE 500 MINNEAPOLIS MN 55455 416042488 501(C)(3) 91291 0 RESEARCH - SYNODOS UNIVERSITY OF WISCONSIN-MILWAUKEE PO BOX 413 MILWAUKEE WI 53201 396093545 501(C)(3) 124000 0 RESEARCH - CONTRACT AWARDS VAN ANDEL RESEARCH INSTITUTE 333 BOSTWICK AVE NE GRAND RAPIDS MI 49503 522000823 501(C)(3) 89000 0 RESEARCH - YIA YALE UNIVERSITY PO BOX 208327 NEW HAVEN CT 65200 061250585 501(C)(3) 126878 0 RESEARCH - CONTRACT AWARDS 16 PART I, LINE 2: GRANTS ARE MONITORED THROUGH THE USE OF PROGRESS REPORTS. RESEARCH TEAMS ARE REQUIRED TO SEND IN PROGRESS REPORTS TO THE CHILDREN'S TUMOR FOUNDATION'S RESEARCH DEPARTMENT PERIODICALLY. MANY OF OUR GRANT PAYMENTS ARE CONTINGENT ON RECEIVING THESE PROGRESS REPORTS. ALL PROGRESS REPORTS ARE REVIEWED BY THE FOUNDATION. X X X 0 0 0 0 0 0 0 1 0 ANNETTE BAKKER PRESIDENT 338238 0 16500 0 0 0 11600 0 25213 0 391551 0 0 0 MICHELE PRZYPYSZNY CHIEF ADVANCEMENT OFFICER 242344 0 11056 0 0 0 9604 0 9082 0 272086 0 0 0 SALVATORE LA ROSA CHIEF SCIENTIFIC OFFICER 220285 0 9049 0 0 0 9239 0 9242 0 247815 0 0 0 SIMON VUKELJ CHIEF MARKETING OFFICER 210265 0 9635 0 0 0 8873 0 17879 0 246652 0 0 0 BARBARA GALLAGHER VICE PRESIDENT OF DEV. 145082 0 4362 0 0 0 6165 0 28250 0 183859 0 0 0 SARAH BOURNE VP, FINANCE AND OPERATIONS 146146 0 5959 0 0 0 5588 0 0 0 157693 0 0 0 PART I, LINE 7 BONUSES WERE APPROVED BY THE BOARD OF DIRECTORS. X 20 620306 FMV X AUCTION ITEMS 150 56455 FMV 0 1 0 PART I, COLUMN (B): THE AMOUNT IN COLUMN (B) REPRESENTS THE NUMBER OF CONTRIBUTORS. FORM 990, PART VI, SECTION B, LINE 11B THE COMPLETE FORM 990 IS PREPARED BY AN INDEPENDENT ACCOUNTANT AND IS DISTRIBUTED IN DRAFT FORM VIA E-MAIL TO ALL BOARD MEMBERS WITH A RETURN RECEIPT PRIOR TO FILING. EACH BOARD MEMBER ACKNOWLEDGES THEIR RECEIPT, REVIEW, AND ACCEPTANCE OF THE FORM 990. FORM 990, PART VI, SECTION B, LINE 12C THE ORGANIZATION HAS A CONFLICT OF INTEREST POLICY AND REGULARLY AND CONSISTENTLY MONITORS AND ENFORCES COMPLIANCE WITH THE POLICY ON AN ANNUAL BASIS. BOARD MEMBERS AND MANAGEMENT ARE REQUIRED TO COMPLETE. FORM 990, PART VI, SECTION B, LINE 15 THE ORGANIZATION'S TOP MANAGEMENT AND KEY EMPLOYEES ARE REVIEWED FOR PERFORMANCE ON AN ANNUAL BASIS. COMPENSATION FOR THESE POSITIONS ARE REVIEWED AND APPROVED BY THE BOARD'S PERSONNEL COMMITTEE. COMPENSATION IS DETERMINED USING CURRENTLY AVAILABLE SALARY DATA FOR NON-PROFITS OF SIMILAR SIZE AND MISSION IN THE NEW YORK CITY AREA. FORM 990, PART VI, SECTION C, LINE 19 ALL DOCUMENTS ARE AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 1,048,795. MANAGEMENT AND GENERAL EXPENSES 121,207. FUNDRAISING EXPENSES 177,668. TOTAL EXPENSES 1,347,670. FORM 990, PART XII, LINE 2C THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.