2012-05-15T13:17:27-07:00 2011-12-31 NE KELLY AND ASSOCIATES LLC 59 TEMPLE PLACE SUITE 556 BOSTON MA 021111307 990 2011-01-01 132298956 The Childrens Tumor Foundation CHIL 2123446633 95 PINE STREET NEW YORK NY 10005 Stuart Match Suna 2012-05-15 true Nancy Kelly 8573839363 2011 2016-02-24 21:20:13Z John McCarthy c/o Organization New York NY 10005 10820786 false false 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. 22 22 47 1000 0 7508599 9337715 0 81555 67827 63447 54072 7653601 9459614 2679813 3401857 0 1996951 2169561 0 928667 2399365 2577169 7076129 8148587 577472 1311027 6597888 9102033 1690300 2872603 4907588 6229430 X 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. false false 4369070 3223857 OUR RESEARCH PROGRAM CONTINUES TO GROW IN BOTH TOTAL GRANTS AWARDED AND TYPES OF RESEARCH BEING FUNDED. CTF'S PRIMARY GRANT MECHANISMS INCLUDE: A) YOUNG INVESTIGATOR AWARDS WHICH PROVIDE UP TO 100K OF FUNDING OVER TWO YEARS TO STUDY IDEAS IN BASIC AND TRANSLATIONAL RESEARCH; B) DRUG DISCOVERY INITIATIVE TO PROVIDE SEED FUNDING (12-50K) TO TEST BOTH APPROVED DRUGS AND NOVEL COMPOUNDS IN VARIOUS NF MODELS- TO DATE, THIS PROGRAM HAS SEEDED APPROXIMATELY $700K OF PROJECTS WHICH HAS RESULTED IN OVER $4 MILLION OF FOLLOW-ON FUNDING; C) NF PRECLINICAL CONSORTIUM WAS EXPANDED FOR ANOTHER TWO YEARS TO SCREEN COMPOUNDS IN BOTH NF1 AND NF2 MOUSE MODELS FOR POTENTIAL USE IN CLINICAL TRIALS; D) CLINICAL RESEARCH AWARD PROGRAM TO FUND ANCILLARY STUDIES ASSOCIATED WITH CLINICAL TRIALS; E) SCHWANNOMATOSIS AWARD PROGRAM WHICH CTF IS THE LARGEST FUNDER IN THE WORLD FOR THIS THIRD TYPE OF NF. 1756167 PUBLIC EDUCATION AND PATIENT SUPPORT- MAJOR AREAS OF FOCUS INCLUDE: CONTINUED INVESTMENT IN UPDATING OUR FULL SERIES OF NF BROCHURES, INCLUDING VARIOUS TRANSLATIONS B) WEB SITE DESIGN AND UPDATES C) INCREASE USE OF BLOG AND SOCIAL MEDIA FOR OUTREACH AND SUPPORT D) QUARTERLY PRINT NEWSLETTER (30K DISTRIBUTION); E) REGIONAL SYMPOSIA AND PATIENT SUPPORT MEETINGS. F) INCREASED MEDIA COVERAGE OF NF, BOTH HUMAN INTEREST STORIES AND RESEARCH ADVANCES. G) HOSTED 15TH ANNUAL NF SUMMER CAMP FOR TEENS WITH NF. H) HOSTED 3rd ANNUAL NF FORUM IN MINNEAPOLIS.OVER 200 PATIENTS, FAMILIES AND CLINICIANS ATTENDED THIS NATIONAL MEETING TO PARTICIPATE IN RESEARCH PRESENTATIONS, PATIENT SUPPORT AND FOLLOWSHIP. 178000 178000 NF CLINIC PROGRAM- AS OF DECEMBER 31, 2011, 44 CLINICS WERE APPROVED BY OUR CLINICAL CARE ADVISORY BOARD AS NETWORK AFFILIATES. UPON ADMISSION, HOSPITALS MAY APPLY FOR GRANT FUNDING TO SUPPORT THE NEEDS AND ENHANCE THE SERVICES TO THE LOCAL NF COMMUNITY. IN 2011 WE MADE GRANTS TO 34 CLINICS AS PART OF THIS PROGRAM. 144000 6447237 true true false true false false false false false true true false false false false false true false false false false true false false true false false true false true false false false false false false false false true false false true false false false false false false false false false true 8 0 true 47 true false false false false false false false false true true false 0 false false false false false false false false false false false X 22 22 false false false false false false false true true false true true true true true false true true true true false false WY WV WI WA VT VA UT TX TN SD SC RI PA OR OK OH NY NV NM NJ NH NE NE ND NC MT MS MO MN MI ME MD MA LA KY KS IN IL ID IA HI GA FL DE DC CT CO CA AZ AR AL X X THE CORPORATION 2123446633 95 PINE STREET NEW YORK NY 100053904 JoAnne Pastel 1.00 X 0 0 0 John Golfinos 1.00 X 0 0 0 Daniel Graeff 1.00 X 0 0 0 Tracy Galloway 1.00 X 0 0 0 Aram Fuchs 1.00 X 0 0 0 Rachel Tiven 1.00 X 0 0 0 Tara Skirzenski 1.00 X 0 0 0 Robert Schaffer 1.00 X 0 0 0 Jason Pontin 1.00 X 0 0 0 Steven McKenzie 1.00 X 0 0 0 Dan Gilbert 1.00 X 0 0 0 Mark Ebel 1.00 X 0 0 0 Suzanne Earle 1.00 X 0 0 0 John Catsimatidis 1.00 X 0 0 0 Colin Bryar 1.00 X 0 0 0 Nate Walker 1.00 X 0 0 0 Bill Brooks 1.00 X 0 0 0 Laura Bona Ganio 1.00 X 0 0 0 Linda Martin 1.00 X X 0 0 0 John McCarthy 1.00 X X 0 0 0 Daniel Altman 1.00 X X 0 0 0 Stuart Match Suna 1.00 X X 0 0 0 Kim Hunter-Schaedle 40.00 X 190000 0 0 Thomas Malone 40.00 X 135000 0 0 George Orfanakos 40.00 X 195000 0 0 520000 3 false true false Patton Boggs LLP 2550 M Street NW Washington DC 20037 Lobbying/ Advocacy 144000 1 99454 2930 2958177 40000 6237154 90562 9337715 0 90339 90339 0 0 0 528929 536963 518755 569649 10174 -32686 -22512 -22512 272768 2958177 272768 0 0 0 Misc. Income 54072 54072 54072 9459614 121899 3329346 3329346 0 72511 72511 0 605104 321771 175010 108323 0 1186856 783765 98971 304120 38467 24747 5601 8119 215138 137904 27705 49529 123996 75624 18829 29543 0 33732 33732 17500 13510 3155 835 144000 144000 0 0 106389 58854 15689 31846 217346 191240 24560 1546 0 132204 104400 20585 7219 0 241209 144799 38107 58303 239473 175116 23759 40598 0 491761 319403 50493 121865 0 0 7809 6029 1390 390 22596 17444 4022 1130 Printing and Publications 96344 63242 3795 29307 Postage and Shipping 124685 56291 5207 63187 FOOD AND BEVERAGE 211476 173099 12814 25563 DUES AND OTHER FEES 123866 3842 117491 2533 APPAREL 88156 81996 6160 278623 148304 91768 38551 8148587 6447237 772683 928667 2632346 4709474 0 16915 11649 0 0 0 0 25315 0 209198 217136 182762 103564 84960 79198 3588531 4063953 0 0 0 40623 20623 6597888 9102033 72248 81570 1598052 2791033 20000 1690300 2872603 X 4365515 4786444 356197 1253060 185876 189926 4907588 6229430 6597888 9102033 X 1311027 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Clinic Network University of Utah 2C 412 Som Salt Lake City UT 84132 876000525 23500 0 Clinic Network University of Minnesota 450 McNamara Alumni Center Minneapolis MN 55455 416007513 50600 0 Drug Discovery University of Central Florida 6900 Lake Nona Boulevard Orlando FL 32827 592924021 29000 0 Young Investigator University of Alabama 1530 3rd Ave South AB 990 Birmingham AL 35294 636005396 69226 0 Young Investigator Trustees of Indiana Uni PO Box 66057 Indianapolis IN 46266 356001673 100000 0 Clinic Network The Wistar Institute 3601 Spruce Street Philadelphia PA 19104 236434390 39146 0 Young Investigator The University of Iowa B5 Jessup Hall Iowa City IA 52242 426004833 53500 0 Drug Discovery Regents of Uni of Minnesota PO Box 1450 NW 5957 Minneapolis MN 55485 416007513 14000 0 Young Investigator Regents of the University of CA 1855 Folsom St San Francisco CA 94103 946036493 159500 0 Preclinical Consortium NYU Medical Ctr 530 1st Ave New York NY 10016 135562308 99487 0 Clinic Research Mount Sinai School One Gustave L Levey Pl New York NY 10029 136171197 35000 0 Young Investigator Memorial Sloan-Kettering Cancer 1275 York Avenue New York NY 10065 131924236 36164 0 Young Investigator Mayo Clinic Rochester 200 First St SW Rochester NY 55905 416011702 27000 0 Clinic Network MA General Hospital 101 Huntington Ave Boston MA 02114 041564655 59600 0 Drug Discovery Johns Hopkins University 725 N Wolfe StMeyer 5-181 Baltimore MD 21287 237424444 51264 0 Clinic Network Indiana University PO Box 66057 Indianapolis IN 46266 356001673 148958 0 Clinical Research House Ear Institute 2100 West Third Street Los Angeles CA 90057 952127707 104889 0 Preclinical Consortium Genetic Alliance 4301 Connecticut Ave NW Washington DC 20008 680573511 10000 0 Biobank General Hospital Corporation PO Box 414876 Boston MA 02241 426979833 105750 0 YIA Fox Chase Cancer Center 333 Cottman Avenue Philadelphia PA 19111 232003072 37500 0 Preclinical Consortium Duke University 2200 W Main Street Durham NC 27705 560532129 26193 0 Young Investigator Childrens Hospital of Phila 34th St Civic Center Blvd Philadelphia PA 19104 231352166 6000 0 Clinic Network Childrens Hospital LA 4650 Sunset Blvd Mailstop Los Angeles CA 90027 951690977 23500 0 Clinic Network, Biobank Childrens Hospital 1 Autumn Street 731 Boston MA 02115 042774441 100000 0 Clinical Research Children National Ctr 111 Michigan Ave Washington DC 20010 521640403 95823 0 Clinic Network CCHMC 3333 Burnet Avenue ML7013 Cincinnati OH 45229 310833936 163000 0 Preclinical Consortium BWH 77 Avenue Louis Pasteur Boston MA 02115 042312909 290728 0 Meeting, Preclinical consortium Beckman Research Institute 1500 E Duarte Road Duarte CA 91010 953432210 15000 0 Drug Discovery 27 2 X X X false false false false false false false false false false Kim Hunter-Schaedle 190000 190000 George Orfanakos 195000 195000 Steve Kendra Former EE. 14172 Use of office & storage false Fundraising 227 90562 FMV false true false Form 990, Part VI, Line 19 Form 990, Part VI, Line 19: Other Organization Documents Publicly Available All document are available upon request within the prescribed time frames as required. Form 990, Part VI, Line 15b Form 990, Part VI, Line 15b: Compensation Review and Approval Process for Officers and Key Employees The Organization's 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, Line 11 Form 990, Part VI, Line 11: Form 990 Review Process The 990 along with the audited financial statements are reviewed in a formal meeting by the Organization's Fiscal Affairs Committee. This Committee makes a formal vote and acceptance of the 990 prior to submission. Form 990, Part III, Line 4d Form 990, Part III, Line 4d : Other Program Services Description OTHER PROGRAM SERVICES 4: ADVOCACY: WE ARE THE LARGEST NON-GOVERNMENT FUNDING SOURCE OF NF RESEARCH. OUR PROGRAMS ARE DESIGNED TO INTEGRATE WITH AND SUPPORT LARGER FEDERALLY FUNDED PROJECTS THROUGH THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) AND NIH. WE ENGAGE A LAW FIRM TO ASSIST US IN OUR LOBBYING FOR CONTINUED FEDERAL FUNDING OF NF RESEARCH, AND WORK WITH OUR VOLUNTEERS ON AN ACTIVE ADVOCACY CAMPAIGN THAT INCLUDES LETTER WRITING, PHONE CALLS AND VISITS TO LEGISLATORS DISTRICT AND WASHINGTON DC OFFICES.