2021-10-29T08:12:29-05:00 2020-12-31 113518842 MARKS PANETH LLP 685 THIRD AVENUE NEW YORK NY 10017 990 2020-01-01 132298956 CHILDREN'S TUMOR FOUNDATION CHIL 2123446633 132 E 43RD ST NO 418 NEW YORK NY 10017 ANNETTE BAKKER PHD PRESIDENT 2123446633 2021-10-26 1 ANNETTE BAKKER PHD 999009999 MAGDALENA CZERNIAWSKI CPA P00535099 2125038800 2021-10-26 2 AAL1 IAL1 2020 2022-09-23 18:48:47Z X ANNETTE BAKKER PHD 132 E 43RD ST NO 418 NEW YORK NY 10017 13062918 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 39 1000 0 0 16140037 11715519 1338437 929324 198308 120799 220905 66304 17897687 12831946 3304234 2913694 0 0 4085516 4309382 0 0 813741 3877482 3170544 11267232 10393620 6630455 2438326 19223379 23094143 1535050 2555328 17688329 20538815 X OUR MISSION: DRIVE RESEARCH, EXPAND KNOWLEDGE, AND ADVANCE CARE FOR THE NF COMMUNITY. OUR VISION: END NF. 0 0 6335561 2913694 995628 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. 2334938 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. 8670499 1 1 0 1 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 1 1 0 0 0 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 43 0 1 39 1 0 0 0 0 0 0 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 1.00 X 0 0 0 CAROL KALAGHER 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 FRANK HAUGHTON BOARD MEMBER 1.00 X 0 0 0 GABRIEL GROISMAN VICE CHAIR 1.00 X X 0 0 0 KENNETH RUDD BOARD MEMBER 1.00 X 0 0 0 LAURA PERFETTI BOARD MEMBER 1.00 X 0 0 0 LEE BABBIS BOARD MEMBER (OUTGOING) 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 PEGGY WALLACE BOARD MEMBER (OUTGOING) 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 RENIE MOSS BOARD MEMBER (OUTGOING) 1.00 X 0 0 0 RICHARD HORVITZ CHAIR EMERITUS 1.00 X X 0 0 0 RICHARD SOLL BOARD MEMBER 1.00 X 0 0 0 ROBERT BRAININ BOARD MEMBER 1.00 X 0 0 0 SIMONE MANSO BOARD MEMBER 1.00 X 0 0 0 STUART SUNA BOARD MEMBER 1.00 X 0 0 0 TRACY GALLOWAY CHAIR 1.00 X X 0 0 0 ANNETTE BAKKER PRESIDENT 37.50 X 343678 0 36025 SARAH BOURNE VP, FINANCE AND OPERATIONS 37.50 X 146710 0 5676 BARBARA GALLAGHER VICE PRESIDENT OF DEV. 37.50 X 144428 0 33457 MICHELE PRZYPYSZNY CHIEF ADVANCEMENT OFFICER 37.50 X 245098 0 18902 PATRICE PANCZA VP, EXTERNAL RELATIONS 37.50 X 124059 0 12639 SALVATORE LA ROSA CHIEF SCIENTIFIC OFFICER 37.50 X 223073 0 16887 SIMON VUKELJ CHIEF MARKETING OFFICER 37.50 X 208926 0 26030 1435972 0 149616 9 0 1 0 SQUIRE PATTON BOGGS 2550 MAIN ST NW WASHINGTON DC 20037 LOBBYING/ADVOCACY 258153 2 9363 691400 11014756 216211 11715519 PARTICIPANT REVENUE 900099 929324 929324 929324 121577 121577 230194 230972 -778 -778 -778 32923 0 32923 32923 RETURN OF UNUSED GRANTS 900099 33381 33381 33381 12831946 995628 0 120799 2361199 2361199 552495 552495 532090 326747 117910 87433 3062676 2649268 208191 205217 112522 88376 14231 9915 316842 242625 44289 29928 285252 217082 40084 28086 270000 270000 955148 736263 99408 119477 8166 5103 1255 1808 285726 164579 71776 49371 351635 265811 51277 34547 301054 165580 90316 45158 28939 26042 903 1994 544998 359929 37941 147128 31857 17521 9557 4779 28412 14515 9939 3958 DUES AND OTHER FEES 238107 147199 60014 30894 FOOD AND BEVERAGE 29183 23164 1289 4730 EQUIPMENT RENTAL AND MA 23456 12901 7037 3518 APPAREL 20479 10335 7600 2544 53384 13765 36363 3256 10393620 8670499 909380 813741 6490455 4598820 7032148 11154589 1477275 2615529 56336 253760 1270 1270 338267 393713 521700 316387 50104 205313 3686459 3825616 91065 45533 19223379 23094143 411814 626569 925196 1384039 348920 198040 195800 1535050 2555328 X 7112042 9394222 10576287 11144593 17688329 20538815 19223379 23094143 2438326 412160 0 X X 0 1 X 1 0 X 15471546 10817315 11939258 16140037 11715519 66083675 15471546 10817315 11939258 16140037 11715519 66083675 9780492 56303183 110210 104412 172362 200112 121577 708673 491971 953426 606656 328020 66304 2446377 69238725 2268125 0.81320 0.82320 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS INCOME - 2016 AMOUNT: $ 41,162. 2017 AMOUNT: $ 491,993. 2018 AMOUNT: $ 6,844. 2019 AMOUNT: $ 13,238. FUNDRAISING - 2016 AMOUNT: $ 450,809. 2017 AMOUNT: $ 461,433. 2018 AMOUNT: $ 111,000. 2019 AMOUNT: $ 82,500. RETURN OF UNUSED GRANTS - 2018 AMOUNT: $ 456,233. 2019 AMOUNT: $ 164,509. 2020 AMOUNT: $ 33,381. BAD DEBT RECOVERY - 2019 AMOUNT: $ 20,000. SALE OF INVENTORY - 2018 AMOUNT: $ 32,579. 2019 AMOUNT: $ 47,773. 2020 AMOUNT: $ 32,923. 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. 29311 29311 0 492389 287076 205313 205313 ASSETS HELD IN TRUST 195800 195800 X 13251606 412160 7500 419660 12831946 0 12831946 10401120 7500 7500 10393620 0 10393620 PART X, LINE 2: THE FOUNDATION HAS NO UNCERTAIN TAX POSITIONS AS OF DECEMBER 31, 2020, IN ACCORDANCE WITH ACCOUNTING STANDARDS CODIFICATION ("ASC") TOPIC 740, WHICH PROVIDES STANDARDS FOR ESTABLISHING AND CLASSIFYING ANY TAX PROVISIONS FOR UNCERTAIN TAX POSITIONS. 0 EAST ASIA 0 0 RESEARCH GRANTS TO SCIENTIST RESEARCH GRANTS 233899 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 RESEARCH GRANTS TO SCIENTISTS RESEARCH GRANTS 296765 NORTH AMERICA, CANADA, AND MEXICO 0 0 RESEARCH GRANTS TO SCIENTISTS RSEARCH GRANTS 21831 0 0 0 0 0 0 552495 0 552495 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES RESEARCH - SYNODOS 21281 WIRE EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, RESEARCH - CRA 117139 WIRE EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, RESEARCH - CONTRACT AWARD 115000 WIRE EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH EVENT -YIA 193500 WIRE EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH - SYNODOS 18265 WIRE 7 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: 1 CHILDREN'S HOSPITAL OF PENNSYLVANIA 3501 CIVIC CENTER BLVD PHILADELPHIA PA 19104 231352166 501(C)(3) 7810 RESEARCH - OPTIC PATHWAY GLIOMA CHILDREN'S HOSPITAL OF PHILADELPHIA 3501 CIVIC CENTER BLVD PHILADELPHIA PA 19104 232237932 501(C)(3) 22779 RESEARCH - SYNODOS CINCINNATI CHILDREN'S HOSPITAL DIVISION OF HUMAN GENETICS 3333 BURNT AVE ML 4900 CINCINNATI OH 45229 310833936 501(C)(3) 37891 RESEARCH - SYNODOS CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNT AVE ML 4900 CINCINNATI OH 45229 310833936 501(C)(3) 65320 RESEARCH - OPTIC PATHWAY GLIOMA CONNECTICUT CHILDREN'S MEDICAL CENTER 282 WASHINGTON ST HARTFORD CT 06106 060646755 501(C)(3) 5000 RESEARCH - NF CLINIC NETWORK INDIANA UNIVERSITY 1044 W WALNUT STREET INDIANAPOLIS IN 46202 356018940 501(C)(3) 135000 RESEARCH - OPTIC PATHWAY GLIOMA & DRUG DISCOVERY INITIATE MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT STREET BOSTON MA 02114 041564655 501(C)(3) 410000 RESEARCH - CONTRACT AWARD, DRUG DISCOVERY INITIATE & CLINICAL RESEARCH AWARD MEDICAL UNIVERSITY OF SOUTH CAROLINA 19 HAGOOD AVE CHARLESTON SC 29425 576028985 501(C)(3) 64000 RESEARCH - YOUNG INVESTIGATOR AWARD MOFFITT CANCER CENTER GENETICS MKC 12902 MAGNOLIA DRIVE TAMPA FL 33612 593238634 501(C)(3) 6000 RESEARCH - NF CLINIC NETWORK NF2 THERAPEUTICS 471 CLINTON ROAD CHESTNUT HILL MA 02467 815242264 501(C)(3) 195000 RESEARCH - CONTRACT AWARD PENN STATE HEALTH 600 UNIVERSITY DR HERSHEY PA 17033 473769205 501(C)(3) 6000 RESEARCH - NF CLINIC NETWORK PRECISION BIOSERVICES INC 8425 PROGRESS DR FREDERICK MD 21701 352463752 501(C)(3) 45668 RESEARCH - OPTIC PATHWAY GLIOMA SAGE BIONETWORKS 2901 3RD AVE STE 330 SEATTLE WA 98121 264489946 501(C)(3) 203926 RESEARCH - CONTRACT AWARD SCHEPENS EYE RESEARCH INSTITUTE INC 20 STANIFORD STREET BOSTON MA 02114 042129889 501(C)(3) 81366 RESEARCH - SYNODOS SEATTLE CHILDREN'S HOSPITAL 4800 SAND POINT WAY NE SEATTLE WA 98105 261561959 501(C)(3) 5150 RESEARCH - NF CLINIC NETWORK STANFORD UNIVERSITY NEUROSCIENCES 750 WELCH RD PALO ALTO CA 94304 630312914 501(C)(3) 85500 RESEARCH - YOUNG INVESTIGATOR AWARD SWEDISH HEALTH SERVICES 801 BROADWAY SEATTLE WA 98122 910433740 501(C)(3) 6000 RESEARCH - NF CLINIC NETWORK THE REGENTS OF THE UNIVERSITY OF CALIFORNIA 1111 FRANKLIN ST OAKLAND CA 94607 946036494 501(C)(3) 94084 RESEARCH - SYNODOS & CONTRACT AWARD THE UNIVERSITY OF IOWA 1 W PARK RD IOWA CITY IA 52242 420796760 501(C)(3) 64000 RESEARCH - YOUNG INVESTIGATOR AWARD TRUSTEES OF COLUMBIA UNIVERSITY 630 WEST 168TH STREET NEW YORK NY 10032 911859360 501(C)(3) 150714 RESEARCH - SYNODOS, CONTRACT AWARD & YOUNG INVESTIGATOR AWARD UC REGENTS 1111 FRANKLIN ST OAKLAND CA 94607 943067788 501(C)(3) 85000 RESEARCH - DRUG DISCOVERY INITIATE UNIVERSITY OF ALABAMA BIRMINGHAM 1720 2ND AVE BIRMINGHAM AL 35294 636001138 501(C)(3) 150000 RESEARCH - CLINICAL RESEARCH AWARD UNIVERSITY OF CALIFORNIA 1111 FRANKLIN STREET OAKLAND CA 94607 946036493 501(C)(3) 108000 RESEARCH - YOUNG INVESTIGATOR AWARD UNIVERSITY OF FLORIDA GAINESVILLE 207 GRINTER HALL GAINVILLE FL 32611 510153878 501(C)(3) 8500 RESEARCH - NF CLINIC NETWORK UNIVERSITY OF MINNESOTA 200 OAK ST SE STE 500 MINNEAPOLIS MN 55455 416042488 501(C)(3) 91291 RESEARCH - SYNODOS UNIVERSITY OF MINNESOTA 200 OAK ST SE STE 500 MINNEAPOLIS MN 55455 416042488 501(C)(3) 150000 RESEARCH - CLINICAL RESEARCH AWARD UNIVERSITY OF UTAH 201 PRESIDENTS CIR SALT LAKE CITY UT 84112 876000525 501(C)(3) 6000 RESEARCH - NF CLINIC NETWORK UT MD ANDERSON CENTER 1515 HOLCOMBE BLVD HOUSTON TX 77030 760300816 501(C)(3) 6000 RESEARCH - NF CLINIC NETWORK VIRGINIA COMMONWEALTH UNIVERSITY 907 FLOYD AVE RICHMOND VA 23284 540757884 501(C)(3) 6000 RESEARCH - NF CLINIC NETWORK WASHINGTON UNIVERSITY 700 ROSEDALE ST LOUIS MO 63112 430653611 501(C)(3) 9727 RESEARCH - SYNODOS 30 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 327678 0 16000 0 0 0 11400 0 24625 0 379703 0 0 0 MICHELE PRZYPYSZNY CHIEF ADVANCEMENT OFFICER 233679 0 11419 0 0 0 9866 0 9036 0 264000 0 0 0 SALVATORE LA ROSA CHIEF SCIENTIFIC OFFICER 214706 0 8367 0 0 0 8953 0 7934 0 239960 0 0 0 SIMON VUKELJ CHIEF MARKETING OFFICER 201383 0 7543 0 0 0 8456 0 17574 0 234956 0 0 0 BARBARA GALLAGHER VICE PRESIDENT OF DEV. 140193 0 4235 0 0 0 5986 0 27471 0 177885 0 0 0 SARAH BOURNE VP, FINANCE AND OPERATIONS 141889 0 4821 0 0 0 5676 0 0 0 152386 0 0 0 PART I, LINE 7 BONUSES WERE APPROVED BY THE BOARD OF DIRECTORS. X 2 1550 FMV X 1 206027 FMV X OTHER 14 8634 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 XII, LINE 2C THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.