2019-11-06T17:08:54-06:00 2018-12-31 911663574 LARSON GROSS PLLC 2211 RIMLAND DR STE 422 BELLINGHAM WA 98226 990 2018-01-01 930995453 FANCONI ANEMIA RESEARCH FUND INC FANC 5416874658 1801 WILLAMETTE STREET NO 200 EUGENE OR 97401 MARK PEARL PRESIDENT 5416874658 2019-11-06 KEATON WERSEN-CPA P01957642 3607344280 69.7.45.162 2019-11-06 15:08:23 PS P 1DB086E85E88E90A8E92E8D93107A317A4F5BEEF 1EAB4B1ED96A08C9B433A1F6FBB7BE15E6841313 2018 2020-03-31 21:24:44Z MARK PEARL 1801 WILLAMETTE STREET NO 200 EUGENE OR 97401 2784743 0 X WWW.FANCONI.ORG X 1989 OR TO FIND EFFECTIVE TREATMENTS AND A CURE FOR FANCONI ANEMIA AND TO PROVIDE EDUCATION AND SUPPORT SERVICES TO AFFECTED FAMILIES WORLDWIDE. 13 12 11 50 0 0 3262131 2638623 0 0 122924 142793 80872 3327 3465927 2784743 0 1944039 0 0 0 725887 0 0 296253 0 989617 0 3659543 3465927 -874800 7712637 6843919 1132939 1391661 6579698 5452258 X TO FIND EFFECTIVE TREATMENTS AND A CURE FOR FANCONI ANEMIA AND TO PROVIDE EDUCATION AND SUPPORT SERVICES TO AFFECTED FAMILIES WORLDWIDE. 0 0 2616051 1897607 RESEARCH - SINCE FARF WAS FOUNDED IN 1989, WE HAVE SUPPORTED MORE THAN $24 MILLION IN RESEARCH, SUPPORTING MORE THAN 230 RESEARCH GRANTS AT MORE THAN 74 CENTERS WORLDWIDE. EVERY YEAR WE HOST A SCIENTIFIC SYMPOSIUM, GATHERING OVER 200 FANCONI ANEMIA (FA) SCIENTISTS, RESEARCHERS, AND DOCTORS FROM AROUND THE WORLD TO PRESENT RESULTS FROM THEIR RESEARCH AND TO COLLABORATE WITH OTHERS IN THE FIELD. IN ADDITION, WE HOLD SMALL WORKSHOPS ON AREAS OF SPECIFIC INTEREST, SUCH AS HEAD AND NECK SQUAMOUS CELL CARCINOMA, IDENTIFICATION OF NEW DRUSG TO TREAT PATIENTS, AND GENE THERAPY. IN 2019, WE LAUNCHED A CLINICAL REGISTRY TO SUPPORT REASEARCH AND EXPEDITE NEW TREATMENTS. 290073 46432 FAMILY SUPPORT AND EDUCATION SERVICES - CURRENTLY, THERE ARE NEARLY 1,000 FAMILIES WORLDWIDE THAT ARE REGISTERED WITH OUR ORGANIZATION AND AN UNDETERMINED NUMBER OF NEWLY DIAGNOSED PATIENTS. WHEN FACED WITH THIS FEVESTATING DIAGNOSIS, THEY LOOK TO FARF FOR SUPPORT. WE PRODUCE INFORMATIONAL PUBLICATIONS, INCLUDING OUR HANDBOOK "GUIDELINES FOR DIAGNOSIS AND MANAGEMENT", A FAMILY DIRECTORY, AND A RESOURCE GUIDE LISING ALL TREATMENT CENTERS AND DOCTORS WHO WORK FOR FA. WE ALSO ORGANIZE A WEEK-LONG CAMP FOR FAMILIES AFFECTED BY FA, WHERE WE BRING SCIENTISTS AND CLINICIANS TO PRESENT THE LASTEST RESEARCH AND TREATMENT DISCOVERIES. WE INCLUDE SUPPORT GROUPS FOR PARENTS AND PATIENTS, RECREATIONAL ACTIVITIES FOR CHILDREN, AND GIVE FAMILY MEMBERS AN OPPORTUNITY TO PARTICIPATE IN VARIOUS RESEARCH PROJECTS. IN ADDITION, WE HOLD AN ANNUAL FA ADULT MEETING IN AN EFFORT TO MEET THE SPECIAL NEEDS OF OUR GROWING ADULT POPULATION. FOR BOTH EVENTS, WE OFFER TRAVEL SCHOLARSHIPS FOR ATTENDEES. 2906124 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 11 0 11 1 0 0 0 0 0 0 0 0 0 0 0 0 X 13 12 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AR CA FL GA HI IL KS KY MD MA MI MN MS NH NJ NM NY OR PA RI SC TN UT VA WV WI X X THE ORGANIZATION 5416874658 1801 WILLAMETTE STREET NO 200 EUGENE OR 97401 MARK PEARL PRESIDENT 5.00 X X 0 0 0 ANDRE' HESSELS VICE PRESIDENT 5.00 X X 0 0 0 SHARON SCHUMAN SECRETARY 5.00 X X 0 0 0 ORION MARX TREASURER 5.00 X X 0 0 0 LYNN FROHNMAYER FOUNDER 5.00 X 0 0 0 NANCY GOLDEN BOARD MEMBER 1.00 X 0 0 0 BILL MCCOREY BOARD MEMBER 1.00 X 0 0 0 RACHEL ALTMANN BOARD MEMBER 1.00 X 0 0 0 STELLA DAVIES BOARD MEMBER 1.00 X 0 0 0 AILEEN CARLOS BOARD MEMBER 1.00 X 0 0 0 JOHN CONNELLY BOARD MEMBER 1.00 X 0 0 0 LISA MINGO BOARD MEMBER 1.00 X 0 0 0 MARK QUINLAN EXECUTIVE DIRECTOR 40.00 X 108639 0 2000 108639 0 2000 1 0 0 0 0 2638623 11368 2638623 142793 142793 OTHER INCOME 900099 3327 3327 3327 2784743 0 0 146120 1637678 1637678 53480 53480 252881 252881 110639 54692 35515 20432 479264 236935 153817 88512 12637 6217 4097 2323 66957 31334 22629 12994 56390 27738 18282 10370 3308 3308 16750 16750 32273 32273 8528 3447 4799 282 97428 30801 42605 24022 18353 3490 14843 20 40844 40844 579459 470560 38909 69990 COMMUNICATION 71615 69943 888 784 RECRUITMENT 32339 5832 2603 23904 EQUIPMENT 26192 5037 15504 5651 SUPPLIES 19028 3274 10850 4904 43500 9477 1958 32065 3659543 2906124 457166 296253 140 105 1017890 2947264 2422 3810565 6692185 0 85985 7712637 6843919 19480 43301 1113459 1348360 1132939 1391661 X 4816176 4082514 1763522 1369744 6579698 5452258 7712637 6843919 -874800 -252640 0 X 0 1 X 1 0 X 1719329 3378398 3096737 3262131 2638623 14095218 1719329 3378398 3096737 3262131 2638623 14095218 4086488 10008730 35113 5693 82382 122924 142793 388905 14484123 80872 0.69100 0.74030 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 2499831 -252640 -32272 -284912 2784743 0 2784743 3627271 0 3627271 32272 32272 3659543 PART XI, LINE 2D - OTHER ADJUSTMENTS: INVESTMENT MANAGEMENT FEES -32,272. PART XII, LINE 4B - OTHER ADJUSTMENTS: INVESTMENT MANAGEMENT FEES 32,272. 0 0 0 0 0 0 0 0 0 EUROPE (INCLUDING ICELAND & GREENLAND) FANCONI ANEMIA RESEARCH 10000 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) FANCONI ANEMIA RESEARCH 182081 CHECK EUROPE (INCLUDING ICELAND & GREENLAND) FANCONI ANEMIA RESEARCH 60800 CHECK 3 0 0 0 0 0 0 1 CHILDRENS HOSPITAL CORPORATION 300 LONGWOOD AVE BOSTON MA 02115 042774441 501(C)3 686848 CLINICAL TRIAL RESEARCH GRANT CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVE CINCINNATI OH 45229 310833936 501(C)3 85000 RESEARCH GRANT FRED HUTCHINSON CANCER RESEARCH CENTER PO BOX 19024 SEATTLE WA 98109 237156071 501(C)3 175000 REASEARCH GRANT OREGON HEALTH AND SCIENCE UNIVERSITY 3181 SW SAM JACKSON PARK RD PORTLAND OR 97239 931176109 170(C)1 10046 CONTRACTED PROJECT THE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY 3145 PORTER DRIVE PALO ALTO CA 94304 941156365 501(C)3 180000 RESEARCH GRANT THE REGENTS OF THE UNIVESITY OF CALIFORNIA 2195 HEARST AVE ROOM 130 BERKELEY CA 94720 946002123 501(C)3 60800 RESEARCH GRANT ROCKEFELLER UNIVERSITY 1230 YORK AVENUE NEW YORK NY 10065 131624158 501(C)3 120000 RESEARCH GRANT UNIVERSITY OF WASHINGTON 1959 NE PACIFIC ST SEATTLE WA 98195 916001537 501(C)3 174984 RESEARCH GRANT YALE UNIVERSITY 25 SCIENCE PARK 150 MUNSON ST NEW HAVEN CT 06520 060646973 501(C)3 125000 RESEARCH GRANT CAMP SUNSHINE AT SEBAGO LAKE INC 35 ACADIA ROAD CASCO ME 04015 222582877 501(C)3 20000 PROGRAM SUPPORT 9 1 SYMPOSIUM SCHOLARSHIPS 30 39194 SYMPOSIUM AND SCIENCE AWARDS 4 7048 CLINICAL TRIAL SCHOLARSHIPS 3 1291 OTHER PROGRAM SCHOLARSHIPS 4 5947 PART I, LINE 2: THE ORGANIZATION COMPILES A GRANT FILE FOR EACH GRANT RECIPIENT THAT HOUSES THE GRANT APPLICATION, REVIEWS CONDUCTED BY OUTSIDE REVIEWERS, THE PROPOSAL REVIEW COMMITTEE'S REPORT, A CV FOR ALL OF THOSE PARTICIPATING IN THE PROJECT, AND A SIGNED ACCEPTANCE OF AWARD. THIS DOCUMENT MUST BE SIGNED BY THE PRINCIPAL INVESTIGATOR AND THE OFFICIAL SIGNING AUTHORITY OF THE INSTITUTION WHERE THE RESEARCH WILL BE PERFORMED. TO MONITOR THE USE OF FUNDS, FINANCIAL AND RESEARCH REPORTS ARE REQUIRED ON AN ANNUAL BASIS DURING THE LIFE OF THE GRANT AND REVIEWED BY THE EXECUTIVE DIRECTOR TO ENSURE FUNDS ARE BEING USED APPROPRIATELY IN ADDITION TO BEING REVIEWED BY THE PROPOSAL COMMITTEE AND THE BOARD. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 WILL BE PREPARED FOR A BOARD MEETING DURING THE YEAR AT WHICH TIME A FINAL DRAFT VERSION WILL BE SHARED WITH THE BOARD AND APPROVED BY VOTE PRIOR TO SUBMITTING TO THE IRS. FORM 990, PART VI, SECTION B, LINE 12C ON AN ANNUAL BASIS, BOARD MEMBERS STATE ANY REAL OR POTENTIAL CONFLICTS OF INTEREST ON A CONFLICT OF INTEREST DISCLOSURE FORM. FORM 990, PART VI, SECTION B, LINE 15 EXECUTIVE DIRECTOR COMPENSATION IS SET BY THE BOARD PRESIDENT AFTER REVIEWING SELF-CONDUCTED MARKET RESEARCH. EMPLOYEE COMPENSATION IS EVALUATED BY COLLECTING COMPARABLE DATA FROM NON-PROFIT, STATE, AND COUNTY SOURCES, AS WELL AS A WAGE ANALYSIS REVIEW BY INDEPENDENT PERSONS WHICH IS THEN USED TO FORMULATE WAGES BY THE EXECUTIVE DIRECTOR AND APPROVED BY THE EXECUTIVE COMMITTEE BEFORE IMPLEMENTATION. FORM 990, PART VI, SECTION C, LINE 19 WHEN GOVERNING DOCUMENTS OR THE CONFLICT OF INTEREST POLICY ARE REQUESTED, A COPY IS MAILED TO THE REQUESTING PARTY. THE ANNUAL FORM 990 AND AUDIT REPORT ARE ON THE ORGANIZATION'S WEBSITE AND COPIES ARE ALSO ISSUED WHEN REQUESTED.