2015-08-07T14:36:57-05:00 2014-12-31 221732349 WISS & COMPANY LLP 485C ROUTE 1 SOUTH SUITE 250 ISELIN NJ 08830 990 2014-01-01 135641857 NATIONAL HEMOPHILIA FOUNDATION NATI 2123283700 7 PENN PLAZA SUITE 1204 NEW YORK NY 10001 VAL BIAS CHIEF EXECUTIVE OFFICER 2123283700 2015-08-07 1 MICHAEL ANDRIOLA P00252682 7322839300 2014 2016-02-25 16:41:14Z VAL BIAS 7 PENN PLAZA SUITE 1204 NEW YORK NY 10001 19375371 0 X WWW.HEMOPHILIA.ORG X 1948 NY DEDICATED TO FINDING BETTER TREATMENTS AND CURES FOR INHERITABLE BLEEDING DISORDES AND TO PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH EDUCATION, ADVOCACY AND RESEARCH. 16 16 68 712 1581730 129207 14116476 15252599 1716117 2052483 233634 484700 -776897 -940068 15289330 16849714 1051280 1384553 0 0 5691936 6087678 12375 24300 812268 7123221 7928120 13878812 15424651 1410518 1425063 19463103 19647371 8196542 7043701 11266561 12603670 X THE NATIONAL HEMOPHILIA FOUNDATION IS DEDICATED TO FINDING BETTER TREATMENTS AND CURES FOR INHERITABLE BLEEDING DISORDERS AND TO PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH EDUCATION, ADVOCACY AND RESEARCH. 0 0 6009667 93989 470753 HEALTH EDUCATION AND TRAINING - THROUGH HANDI, NHF'S INFORMATION RESOURCE CENTER, MORE THAN 2,000 REQUESTS WERE ANSWERED IN 2014. THESE REQUESTS WERE RECEIVED FROM PATIENTS, FAMILIES, HEALTHCARE PROVIDERS AND THE GENERAL PUBLIC ON SUCH TOPICS AS HEMOPHILIA, VON WILLEBRAND DISEASE, HEALTHCARE COVERAGE, HEPATITIS C, HIV, INHIBITOR FORMATION AND SCHOOL ISSUES. HANDI DEVELOPED A NEW PATIENT BROCHURE TITLED, "ROLE OF NEW PROLONGED HALF-LIFE CLOTTING FACTORS IN HEMOPHILIA: NEW CLOTTING FACTORS FOR DOSING SCHEDULE FLEXIBILITY." THIS PUBLICATION HAS BEEN DISTRIBUTED TO HEMOPHILIA TREATMENT CENTERS AND PATIENTS ACROSS THE UNITED STATES. NHF ORGANIZED 2 INHIBITOR EDUCATION SUMMITS IN ENGLISH FOR PATIENTS AND FAMILIES EXPERIENCING THE COMPLICATION OF AN INHIBITOR. THE FIRST WAS JULY 10-13, 2014, IN ALBUQUERQUE, NM, WITH 111 FAMILIES ATTENDING AND 388 TOTAL PARTICIPANTS. THE SECOND WAS JULY 24-27, 2014, IN BALTIMORE, MD, WITH 114 FAMILIES ATTENDING AND 410 TOTAL PARTICIPANTS. NHF ORGANIZED AN INHIBITOR EDUCATION SUMMIT IN SPANISH FOR PATIENTS AND FAMILIES IN PHOENIX, AZ, ON MAY 30 - JUNE 1, 2014, WITH 15 FAMILIES ATTENDING AND 60 TOTAL PARTICIPANTS. PHYSICIAN REPRESENTATIVES FROM NHF'S MEDICAL AND SCIENTIFIC ADVISORY COUNCIL (MASAC) AS WELL AS REPRESENTATIVES FROM THE NURSING, SOCIAL WORK AND PHYSICAL THERAPY WORKING GROUPS DEVELOPED MORE THAN 40 EDUCATIONAL SESSIONS FOR THE 2014 ANNUAL MEETING, WHICH PROVIDED BOTH CME AND CEU ACCREDITATION. THE PRIMARY GOALS OF THE NATIONAL HEMOPHILIA FOUNDATION'S (NHF'S) VICTORY FOR WOMEN PROGRAM ARE: 1) TO INCREASE AWARENESS TO FACILITATE EARLY AND ACCURATE DIAGNOSES; AND 2) TO PROVIDE AFFECTED WOMEN WITH EDUCATION AND SUPPORT. 2014 HIGHLIGHTS INCLUDED: 6-MONTH WEBINAR SERIES WITH KEY LEADERS AND GUEST SPEAKERS THAT TAUGHT CHAPTERS HOW TO CREATE A WOMAN'S EDUCATIONAL SUPPORT PROGRAM AND HOW TO EVALUATE SUCCESS; THIS PROGRAM INCLUDED FUNDS TO CHAPTERS FOR EDUCATIONAL AND SUPPORT ACTIVITIES FOR GIRLS AND WOMEN WITH BLEEDING DISORDERS; FUNDING FOR CHAPTERS TO SEND A WOMAN WITH A BLEEDING DISORDER TO THE NHF ANNUAL MEETING; PROVIDED SEVEN EDUCATIONAL SESSIONS FOR FEMALE CONSUMERS AT THE NHF 2014 ANNUAL MEETING; AND PROVIDED WORKSHOPS (TOPICS INCLUDED: TELLING YOUR STORY," "BE THE CHANGE YOU WANT TO SEE" - ADVOCACY, AND "COMMUNICATING WITH YOUR HEALTHCARE PROVIDER") FOR CONSUMERS AT CHAPTER EDUCATION DAYS AND WOMEN'S RETREATS.STEPS FOR LIVING IS A MULTIMEDIA EDUCATIONAL PROGRAM DESIGNED TO INCREASE ACCESS TO AGE AND CULTURALLY APPROPRIATE INFORMATION SO THAT CHILDREN, TEENS, ADULTS AND FAMILIES CAN MANAGE THE DAILY CHALLENGES OF LIVING WITH A BLEEDING DISORDER. THIS ALSO INCLUDES ENSURING SUCCESSFUL LIFE TRANSITIONS AND PREVENTING SECONDARY COMPLICATIONS. IN 2014, THE FOLLOWING ENHANCEMENTS WERE ADDED TO THE STEPS FOR LIVING WEBSITE: THE ENTIRE WEBSITE CAN NOW BE VIEWED IN ENGLISH OR SPANISH; THE NEXT STEP SECTION HAS A TOGGLE TO CHANGE THE TONE, APPEARANCE AND FEEL OF THE CONTENT TO DIRECTLY ADDRESS KIDS OR THEIR PARENTS AND ADULTS; THE ENTIRE WEBSITE IS NOW MOBILE-FRIENDLY, AND A NEW VIDEO ON VON WILLEBRAND DISEASE WAS PRODUCED AND ADDED TO THE SITE. NHF PROVIDED 2 IN-PERSON STEPS FOR LIVING TRAIN THE TRAINER PROGRAMS FOR STAFF AND HEALTHCARE PROVIDERS FROM 27 CHAPTERS/HTCS ACROSS THE COUNTRY. NHF CONTINUED TO PRINT AND DISTRIBUTE MORE THAN 2,000 EDUCATIONAL PRINT MATERIALS INCLUDING GUIDELINES FOR GROWING BROCHURE SERIES, A WELCOME KIT FOR NEWLY DIAGNOSED FAMILIES AND MY HTC AND ME COLORING BOOKS IN ENGLISH AND SPANISH. NHF HAS DESIGNED THE NATIONAL YOUTH LEADERSHIP INSTITUTE (NYLI) TO ASSIST YOUNG PEOPLE FROM THE BLEEDING DISORDERS COMMUNITY TO BECOME WELL-TRAINED, RECOGNIZED LEADERS. NHF ACHIEVES THESE OUTCOMES BY PROVIDING YOUNG ADULTS WITH TRAINING, SUPPORT AND OPPORTUNITIES TO PROVIDE EDUCATION TO THE BLEEDING DISORDERS COMMUNITY. IN 2014, NHF PROVIDED TRAININGS TO THE 25 MEMBERS OF NYLI ON TOPICS INCLUDING PUBLIC SPEAKING, ADVOCACY, NONPROFIT MANAGEMENT AND FUNDRAISING. 12 NYLI MEMBERS ASSUMED LEADERSHIP POSITIONS IN A VARIETY OF NHF PROGRAMS, INCLUDING SERVING AS A NON-VOTING MEMBER OF THE NHF BOARD; NHF ANNUAL MEETING PLANNING COMMITTEE; CDC CONTENT ADVISORY GROUPS FOR JOINT HEALTH AND WOMEN WITH BLEEDING DISORDERS; 1ST-YEAR NYLI LEADERSHIP TRAINING; WASHINGTON DAYS AND NHF ANNUAL MEETING NYLI TRAINING COMMITTEE; ANNUAL MEETING TEEN TRACK; HEMAWARE MAGAZINE EDITORIAL GROUP; AND SOCIAL MEDIA REPRESENTATIVE. NYLI MEMBERS PROVIDED 8 EDUCATIONAL SESSIONS, ADVOCATED ON BEHALF OF THEIR STATES IN WASHINGTON, DC, AT NHF'S WASHINGTON DAYS ADVOCACY EVENT ON THE HILL, DELIVERED PEER EDUCATION PROGRAMS FOR TEENS AND FACILITATED RAP SESSIONS AT NATIONAL MEETINGS. NHF ALSO INTRODUCED A NEW 3-YEAR STRUCTURE FOR NYLI, WHICH EMPHASIZES TRAINING IN HOW TO DELIVER IN-PERSON PROGRAMMING FOR LOCAL CHAPTERS AND HTCS. AREAS OF FOCUS ARE OUTREACH, ADVOCACY AND NONPROFIT DEVELOPMENT. 3708373 209819 COMMUNITY SERVICES- NHF'S PUBLIC POLICY DEPARTMENT WORKS TO ESTABLISH AND ADVOCATE FOR POLICIES THAT PROMOTE THE HEALTH, SAFETY, RIGHTS AND ACCESS TO CARE FOR PEOPLE WITH BLEEDING DISORDERS BY EDUCATING FEDERAL AND STATE LAWMAKERS, OTHER GOVERNMENT AGENCIES AND OFFICIALS , INDUSTRY AND ALLIED ORGANIZATIONS. TWO KEY AREAS OF FOCUS ARE PAYER AND CONSUMER EDUCATION, AND SELF-ADVOCACY. THE PUBLIC POLICY DEPARTMENT PROVIDES TRAINING, TOOLS AND HANDS-ON SUPPORT TO CONSUMERS TO HELP THEM BECOME EFFECTIVE SELF-ADVOCATES. CONSUMERS ARE ENCOURAGED TO PARTICIPATE IN NHF'S ANNUAL WASHINGTON DAYS PROGRAM, WHICH IS A GRASSROOTS EVENT THAT BRINGS PATIENTS AND THEIR FAMILIES TO THE HILL TO MEET WITH THEIR MEMBERS OF CONGRESS. IN ADDITION, NHF PROVIDES A SERIES OF EDUCATIONAL OPPORTUNITIES FOR PAYERS TO HELP THEM BETTER UNDERSTAND THE UNIQUE HEALTHCARE NEEDS OF THOSE AFFECTED BY BLEEDING DISORDERS. 1540240 406506 CHAPTER SERVICES -NHF'S CHAPTER SERVICES DEPARTMENT PROVIDES COMMUNITY SUPPORT BY HELPING ITS 51 MEMBER CHAPTERS OFFER EDUCATION, RESOURCES AND REFERRALS TO AFFECTED MEMBERS OF THE BLEEDING DISORDERS COMMUNITY IN THE AREAS THAT EACH CHAPTER SERVES. CHAPTER SERVICES OFFERS THE CHAPTERS FINANCIAL SUPPORT IN THE FORM OF GRANTS, SPONSORS TRAINING MEETINGS AND PROVIDES SOME HOTEL EXPENSE SUPPORT FOR ADVOCACY MEETINGS. DEPARTMENT STAFF MEMBERS MENTOR CHAPTER LEADERS ON HOW TO CREATE, EXECUTE AND EVALUATE EDUCATIONAL PROGRAMS DESIGNED FOR THEIR AFFECTED CONSTITUENTS. IN 2014 CHAPTER SERVICES HELD TWO REGIONAL LEADERSHIP SEMINARS OFFERING TRAINING ON ETHICAL ISSUES FOR NONPROFITS, HEALTHCARE FOR CHAPTERS, FUNDRAISING, ADVOCACY AND EDUCATIONAL INITIATIVES. A FULL "CHAPTER TRAINING TRACK" WAS ALSO OFFERED DURING NHF'S 2014 ANNUAL MEETING IN WASHINGTON, DC. 999115 674239 RESEARCH - NHF AWARDED THREE NHF/BAXTER CLINICAL FELLOWSHIPS TO FELLOWS FROM THE CHILDREN'S HOSPITAL OF PHILADELPHIA AND THE UNIVERSITY OF PENNSYLVANIA, TULANE UNIVERSITY MEDICAL CENTER- LOUISIANA CENTER FOR BLEEDING AND CLOTTING DISORDERS, AND THE DANA FARBER/BOSTON CHILDREN'S CANCER AND BLOOD DISORDERS CENTER. FIVE NHF JUDITH GRAHAM POOL POSTDOCTORAL RESEARCH FELLOWSHIPS WERE AWARDED AT THE FOLLOWING INSTITUTIONS: THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL, HARVARD MEDICAL SCHOOL/BOSTON CHILDREN'S HOSPITAL, THE CHILDREN'S HOSPITAL OF PHILADELPHIA AND THE UNIVERSITY OF MICHIGAN LIFE SCIENCES INSTITUTE. THE NHF NURSING EXCELLENCE FELLOWSHIP WAS AWARDED TO A NURSE AT THE NORTHERN REGIONAL BLEEDING DISORDERS CENTER IN TRAVERSE CITY, MI, FOR HER PROJECT, "BLEEDING DISORDERS PEDIATRIC PAIN INITIATIVE." THE NHF SOCIAL WORK EXCELLENCE FELLOWSHIP WAS AWARDED TO A SOCIAL WORKER AT THE CHILDREN'S MEDICAL CENTER OF CENTRAL TEXAS IN AUSTIN FOR HER PROJECT, "A STANDARDIZED APPROACH TO EMPOWERING FAMILIES WITH HEMOPHILIA." THE NHF PHYSICAL THERAPY EXCELLENCE FELLOWSHIP WAS AWARDED TO A PHYSICAL THERAPIST AT THE CENTER FOR COMPREHENSIVE CARE AND DIAGNOSIS OF INHERITED BLEEDING DISORDERS IN ORANGE, CA, FOR HER PROJECT, "PREVALENCE OF GROSS MOTOR DELAYS IN CHILDREN WITH HEMOPHILIA." 999115 674239 12257395 1 1 0 1 0 0 0 0 0 1 1 1 0 0 1 1 1 0 0 0 0 1 0 1 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 132 0 68 1 1 1 0 0 0 0 1 1 0 0 0 0 X 16 16 0 0 0 0 1 1 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK AZ AR CA CO CT KS FL GA HI IL KY ME MD MA MI MN MS MO NH NJ NM NY NC ND OH OK RI SC TN VA WA WV WI UT PA OR X X JORDANA ZEGER 2123283700 7 PENN PLAZA SUITE 1204 NEW YORK NY 10001 JORGE DE LA RIVA CHAIR 10.00 X X 0 0 0 KENNETH TRADER DIRECTOR 10.00 X 0 0 0 CAROL SIMONETTI VICE-CHAIR 10.00 X X 0 0 0 BRIAN ANDREW TREASURER 10.00 X X 0 0 0 JEFF ALEXIS MD DIRECTOR 10.00 X 0 0 0 JORDAN BLACK DIRECTOR 10.00 X 0 0 0 MARK BORRELIZ SECRETARY 10.00 X X 0 0 0 DAVID COHENOUR DIRECTOR 10.00 X 0 0 0 BARBARA GORDON DIRECTOR 10.00 X 0 0 0 JAMES F HAMMEL MD DIRECTOR 10.00 X 0 0 0 KRISTIE KAY OSTASH MD DIRECTOR 10.00 X 0 0 0 JAMES A HEER DIRECTOR 10.00 X 0 0 0 MATT RHODES DIRECTOR 10.00 X 0 0 0 DUTTA SATADIP DIRECTOR 10.00 X 0 0 0 GILBERT C WHITE II MD DIRECTOR 10.00 X 0 0 0 LYNN WILMARTH DIRECTOR 10.00 X 0 0 0 VAL BIAS CHIEF EXECUTIVE OFFICER 40.00 X 327256 0 70311 JORDANA ZEGER CHIEF OPERATING OFFICER 40.00 X 194461 0 40660 JOSEPH KLEIBER SENIOR V.P. OF CHAPTER SER 40.00 X 189732 0 38883 MARY ANN LUDWIG V.P. OF DEVELOPMENT 40.00 X 217685 0 32144 NEIL FRICK V.P. OF RESEARCH & MEDICAL 40.00 X 148402 0 23710 JOHN INDENCE V.P. OF MARKETING AND COMM 40.00 X 148098 0 23722 SANDRA ROTELLINI V.P. OF CHAPTER DEVELOPMENT & EDUCATION 40.00 X 135825 0 22446 MICHELLE RICE V.P. OF PUBLIC POLICY & STAKEHOLD RELATION 40.00 X 133678 0 39350 1495137 0 291226 12 0 1 0 THE MAGAZINE GROUP 1129 20TH ST 10TH FLOOR WASHINGTON DC 20036 PRODUCTION OF HEMAWARE 549918 INTEGRATED PUBLISHING SALES LLC 519 SPICEBUSH LANE CHARGIN FALLS OH 44023 ADVERTISING SALES 221374 STRATEGIC MARKETING & MAILING INC 3002 N APOLLO DRIVE CHAMPAIGN IL 61822 DESIGN, LETTERSHOP AND PRINTING SERVICES 204886 CAVAROCCHI RUSCIO DENNIS ASSOCIATES L 600 MARYLAND AVE SW STE 835W WASHINGTON DC 20024 CONSULTANT FOR STRATEGIC SERVICES AND PU 204000 PLENTY CONSULTING INC 820 W JACKSON BLVD STE 800 CHICAGO IL 60607 NATIONAL WALK CONSULTANTS 165500 7 23973 1801293 738211 12689122 13712 15252599 ADVERTISING 541800 1581730 1581730 EDUCATIONAL SEMINARS 611710 462868 462868 PUBLICATIONS 900099 7885 7885 2052483 205115 205115 1806283 1526698 279585 279585 279585 34030 1801293 998959 -964929 -964929 24861 24861 24861 16849714 470753 1581730 -455368 1295715 1295715 38838 38838 50000 50000 861303 614202 191534 55567 4041462 2780511 1003361 257590 235021 191847 24481 18693 529522 448940 50262 30320 420370 356399 39901 24070 106830 23585 82072 1173 57449 57449 188052 188052 24300 24300 38432 38432 1288668 995415 276697 16556 175610 131826 32798 10986 484994 306645 156103 22246 3437153 3279539 130305 27309 10379 7031 2672 676 42755 42755 UNRELATED BUS. INC. TAX 51937 51937 STATIONERY AND PRINTING 982746 729176 57819 195751 EQUIPMENT RENTAL 630079 559477 56688 13914 POSTAGE AND SHIPPING 188113 90204 5534 92375 244923 118056 106125 20742 15424651 12257395 2354988 812268 8616494 8259231 1680631 1069393 860550 925301 132967 132877 1417627 1362990 26429 54637 7951982 8713245 194050 492687 19463103 19647371 1862773 1766481 6152418 5101322 181351 175898 8196542 7043701 X 7966957 9118296 3049604 3235374 250000 250000 11266561 12603670 19463103 19647371 X 1425063 -298380 210426 X 0 1 X 1 1 1 X 8197715 9705585 12859589 14116476 15252599 60131964 8197715 9705585 12859589 14116476 15252599 60131964 36674904 23457060 162097 157760 151910 157447 205115 834329 147971 86234 40297 130207 404709 319600 343205 8792 24861 696458 62067460 3251717 0.37790 0.39160 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 1 23934 0 0 1 223463 1 27725 0 275122 0 PART II-B, LINE 1: THE PUBLIC POLICY DEPARTMENT WORKS TO ESTABLISH AND ADVOCATE FOR POLICIES THAT PROMOTE THE HEALTH, SAFETY, RIGHTS AND ACCESS TO CARE FOR PERSONS WITH BLEEDING DISORDERS BY WORKING WITH FEDERAL AND STATE LAWMAKERS, OTHER GOVERNMENT AGENCIES AND OFFICIALS, INDUSTRY AND ALLIED ORGANIZATIONS. TWO KEY INITIATIVES OF THE DEPARTMENT ARE THE NATIONAL ADVOCACY EMPOWERMENT PROGRAM (NAEP) AND WASHINGTON DAYS. THE NAEP PROVIDES TRAINING, TOOLS AND SUPPORT TO ASSIST CONSUMERS IN BECOMING EFFECTIVE ADVOCATES. WASHINGTON DAYS IS NHF'S ANNUAL GRASSROOTS EVENT WHICH BROUGHT PATIENTS TO WASHINGTON D.C. TO MEET WITH MEMBERS OF CONGRESS. 314811 13250 328061 287878 26933 314811 271335 16543 287878 268750 2585 271335 261250 7500 268750 0.76210 0.23800 0 0 175302 173871 1431 226346 186566 39780 1015979 1002553 13426 54637 CORPORATE BONDS 5229705 F COMMON STOCKS 1864851 F EXCHANGE TRADED EQUITY FUNDS 1618689 F 8713245 DEFERRED RENT 8699 457B PLAN PAYABLE 167199 175898 X 16826055 -298380 64295 210426 -23659 16849714 0 16849714 15488946 64295 64295 15424651 0 15424651 PART V, LINE 4: THE FOUNDATION TEMPORARILY RESTRICTED $13,250 IN 2014 REPRESENTS INCOME FROM THE ENDOWMENT FUND TO BE USED FOR A RESEARCH GRANT. TEMPORARILY RESTRICTED ASSETS OF $78,061 REPRESENTS INCOME ACCUMULATION FROM INCEPTION - JULY 1, 2008 TO DECEMBER 31, 2014. PART X, LINE 2: THE FOUNDATION IS A NONPROFIT VOLUNTARY HEALTH ORGANIZATION EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501 (C)(3) OF THE INTERNAL REVENUE CODE AND HAS MADE NO PROVISION FOR FEDERAL OR STATE INCOME TAXES IN THE ACCOMPANYING FINANCIAL STATEMENTS. IN ADDITION, THE FOUNDATION HAS BEEN DETERMINED BY THE INTERNAL REVENUE SERVICE (IRS) NOT TO BE A "PRIVATE FOUNDATION" WITHIN THE MEANING OF SECTION 509(A) OF THE INTERNAL REVENUE CODE. OTHER SIGNIFICANT TAX POSITIONS INCLUDE ITS DETERMINATION OF WHETHER ANY AMOUNTS ARE SUBJECT TO UNRELATED BUSINESS INCOME TAX (UBIT). THE FOUNDATION HAS ACTIVITIES SUBJECT TO UBIT IN THE YEARS ENDED 2014 AND 2013 AND HAS FILED FORM 990T. ALL SIGNIFICANT TAX POSITIONS HAVE BEEN CONSIDERED BY MANAGEMENT AND IT HAS BEEN DETERMINED THAT ALL TAX POSITIONS WOULD BE SUSTAINED UPON EXAMINATION BY TAXING AUTHORITIES. THE FOUNDATION IS REQUIRED TO FILE FORM 990 (RETURN OF ORGANIZATION EXEMPT FROM INCOME TAX), WHICH IS SUBJECT TO EXAMINATION BY THE IRS UP TO THREE YEARS FROM THE EXTENDED DUE DATE OF THE TAX RETURN. THE FORMS 990 AND CHAR500 FOR 2010 THROUGH 2013 ARE OPEN TO EXAMINATION BY THE IRS AS OF DECEMBER 31, 2014. UNRELATED BUSINESS INCOME TAX FOR THE YEARS ENDED DECEMBER 31, 2014 AND 2013 AMOUNTED TO $51,937 AND $10,365 RESPECTIVELY AND IS INCLUDED UNDER PRINTING AND OTHER (PRODUCTION OF THE HEMAWARE MAGAZINE, BOTH PRINTED AND ONLINE FORMATS) IN THE STATEMENTS OF FUNCTIONAL EXPENSES. PART XI, LINE 2D - OTHER ADJUSTMENTS: ADJUSTMENT FOR EXCESS EXPENSE ACCRUAL IN CONNECTION W/ARBITRATION 210,426. 0 0 0 0 0 0 0 0 0 0 NORTH AMERICA DONATION TO "CLOSE THE GAP CAMPAIGN" TO MAKE POSITIVE STRIDES FOR SUSTAINABLE CARE AND TREATMENT FOR ALL, INTERNATIONALLY. 50000 CHECK 0 0 0 0 0 0 X X X X X 1 JOSEPH TUMULO - GIFT PLANNING DEVEL 100 CHESTNUT PLACE NEW HARTFORD NY 13413 STRATEGIC PLANNING & DEV., TRAINING ON GIFT GIVING 0 0 5000 -5000 MATTHEW HUGG - HUGGDOTNET LLC 807 EAST HANCOCK STREET LANSDALE PA 19446 INTERVIEWED DONORS & WROTE DONOR NEWLETTERS 0 0 8300 -8300 ANTHONY BUFFONE - STRATEGIC IDENTIT 2112 PARKDALE AVENUE GLENSIDE PA 19038 CONSULTANT/ NAT'L HEMOPHILIA WALK PROGRAM 0 0 11000 -11000 24300 -24300 AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY WALK-A-THON 1221305 1221305 15000 3844 40599 32441 3535 621618 SOIREE 437404 419928 17476 6137 54589 97 2000 76771 6 176614 160060 16554 9219 41331 10187 8995 72596 1835323 1801293 34030 15000 19200 136519 42725 14530 770985 998959 -964929 1 ALASKA HEMOPHILIA ASSOCIATION 3340 PROVIDENCE DRIVE STE A352 ANCHORAGE AK 99508 943143226 501(C)(3) 45000 STAFFING GRANT-TO SUPPORT THE LOCAL BLEEDING DISORDER COMMUNITY AND TO MEET METRICS ESTABLISHED WITHIN NHF'S ACT INITIATIVE BLEEDING DISORDER FOUNDATION OF WASHINGTON 9639 FIRDALE AVE SUITE A EDMONDS WA 98020 916068857 501(C)(3) 15751 STAFFING GRANT-TO SUPPORT THE LOCAL BLEEDING DISORDER COMMUNITY & TO MEET METRICS ESTABLISHED WITHIN NHF'S ACT INITIATIVE BLEEDING DISORDER ASSN OF NE NEW YORK PO BOX 947 172B COLUMBIA TURNPIKE RENSSELAER NY 12144 222519156 501(C)(3) 30955 ADVOCACY CAPACITY BUILDING; V4W GRANT-WEBINAR SERIES PROG AND STAFFING ASSISTANCE FOR CHAPTER BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 39833 JGP RESEARCH FELLOWSHIP-"MECHANOREGULATION OF VON WILLEBRAND FACTOR INHIBITION AND ACTIVATION" CHILDREN'S BLOOD & CANCER CENTER C TEXAS 1301 BARBARA JORDAN BLVD SUITE 401 AUSTIN TX 78723 521640403 501(C)(3) 10000 SOCIAL WORKERS' EXCELLENCE FELLOWSHIP CENTER OF INHERITED BLOOD DISORDERS 1310 W STEWART DRIVE SUITE 606 ORANGE CA 92868 270179192 501(C)(3) 10000 PHYSICAL THERAPIST EXCELLENCE FELLOWSHIP CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVE WASHINGTON DC 20010 521640403 501(C)(3) 15000 HTC CAPACITY BUILDING GRANT FOR ADOLESCENT TRANSITION CLINICS CHILDREN'S HOSPITAL OF PHILADELPHIA 3501 CIVIC CENTER BOULEVARD PHILADELPHIA PA 19104 231352166 501(C)(3) 50000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS DRDA-UNIVERSITY OF MICHIGAN 3003 SOUTH STATE ROOM 1054 ANN ARBOR MI 48109 386006309 501(C)(3) 35000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS GREAT LAKES HEMOPHILIA FOUNDATION 638 N 18TH ST STE 108 MILWAUKEE WI 53233 237367636 501(C)(3) 14105 STAFFING ASSISTANCE FOR CHAPTER HEMOPHILIA COUNCIL OF CALIFORNIA 1507 21ST STREET STE 103 SACRAMENTO CA 95811 680182998 501(C)(3) 75000 ADVOCACY CAPACITY BUILDING GRANT HEMOPHILIA CENTER AT OREGON HEALTH & SCIENCE 707 SW GAINES STREET PORTLAND OR 97239 237083114 501(C)(3) 15000 HTC CAPACITY BUILDING GRANT-FUNDING PSYCHOLOGY FELLOWSHIPS AND SURVEYS HEMOPHILIA FOUNDATION OF OREGON 10940 SW BARNES RD 129 PORTLAND OR 97225 930551733 501(C)(3) 17260 STAFFING ASSISTANCE FOR CHAPTER HEMOPHILIA OF IOWA 58N 5TH STREET PO BOX 415 CENTRAL CITY IA 52214 421334948 501(C)(3) 8767 STAFFING ASSISTANCE FOR CHAPTER HEMOPHILIA THROMBOSIS TREATMENT CTR HAWAII 55 MERCHANT STREET 26TH FLOOR HONOLULU HI 96813 990246364 501(C)(3) 23550 HTC CAPACITY BUILDING GRANT FOR PATIENT OUTREACH TO REMOTE AREAS HEMOPHILIA TREATMENT CENTER OF NEVADA 3121 SOUTH MARYLAND PARKWAY SUITE 206 LAS VEGAS NV 89109 260286469 501(C)(3) 20000 HTC CAPACITY BUILDING GRANT N DAKOTA HEMOSTASIS TROMBOSIS TREATMENT CENTER 520 MAIN STREET SUITE 700 FARGO ND 58102 450398104 501(C)(3) 21191 SURVEY OF PATIENT KNOWLEDGE AND ATTITUDES; COORDINATE CARE WITH EDUCATORS, SCHOOL NURSES, DENTISTS, ETC MUNSON MEDICAL CENTER (N REGION BLEEDING DISORDERS CENTER) 1105 SIXTH ST TRAVERSE CITY MI 49684 381362830 501(C)(3) 13500 NURSING EXCELLENCE FELLOWSHIP NEW ENGLAND HEMOPHIA CENTER 55 LAKE AVE NORTH NORTH WORCESTER MA 01655 043167352 501(C)(3) 7303 HTC CAPACITY BUILDING GRANT FOR GENETIC COUNSELING NORTHER OHIO HEMOPHILIA FOUNDATION 5000 ROCKSIDE RD SUITE 230 INDEPENDENCE OH 44131 341018501 501(C)(3) 6596 CHAPTER-VICTORY FOR WOMAN PROGRAM AND STAFFING ASSISTANCE REGENTS OF THE UNIVERSITY OF MICHIGAN 3003 S STATE ST 1ST FL ANN ARBOR MI 48109 386006309 501(C)(3) 31500 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS SOUTHWEST OHIO HEMOPHILA FOUNDATION 3131 SOUTH DIXIE DRIVE SUITE 103 MORAINE OH 45439 311527065 501(C)(3) 22500 ADVOCACY CAPACITY BUILDING GRANT ST LUKE'S HEMOPHILIA CENTER 100E IDAHO STREET BOISE ID 83712 820161600 501(C)(3) 15000 HTC CAPACITY BUILDING GRANT TEXAS CENTRAL HEMOPHILIA ASSOCIATION 12700 HILLCREST ROAD STE 191 DALLAS TX 75230 751187148 501(C)(3) 47500 ADVOCACY CAPACITY BUILDING AND STAFFING ASSISTANCE FOR CHAPTER THE CHILDREN'S HOSPITAL OF PHILADELPHIA 34TH STREET CIVIC CENTER BOULEVARD PHILADEPHIA PA 19104 231352166 501(C)(3) 52500 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS ADMINISTRATORS OF THE TULANE EDUCATIONAL FUND 6823 ST CHARLES AVENUE NEW ORLEANS LA 70118 720423889 501(C)(3) 100000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS THE MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK RD PO BOX 26500 MILWAUKEE WI 53226 390806261 501(C)(3) 47749 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS THE OHIO STATE UNIVERSITY 1960 KENNY RD COLUMBUS OH 43210 316025986 501(C)(3) 45000 HTC CAPACITY BUILDING GRANT UNIVERSITY OF N CAROLINA AT CHAPEL HILL OFFICE OF SPONSORED RESEARCH PO BOX 402420 ATLANTA GA 30384 566001393 501(C)(3) 104667 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS UNIV OF TEXAS HEALTH SCIENCE CENTER AT HOUSTON PO BOX 301418 DALLAS TX 75303 741761309 501(C)(3) 28125 CAREER FOCUSED PROGRAMS, PATIENCE ASSISTANCE FOR CAREER/EDUCATIONAL NEEDS UNIV OF COLORADO DENVER 13199 EAST MONTVIEW BLVD AURORA CO 80045 840404231 501(C)(3) 92986 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS UNIVERSITY HOSPITALS CASE MEDICAL CENTER 11100 EUCLID AVE CLEVELAND OH 44106 340714775 501(C)(3) 7800 HTC CAPACITY BUILDING GRANT UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92093 956006144 501(C)(3) 70000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS VANDERBILT UNIVERSITY MEDICAL CENTER PO BOX 121236 DALLAS TX 75312 620476822 501(C)(3) 49600 HTC CAPACITY BUILDING GRANT FOR WOMEN WITH BLEEDING DISORDERS VIRGINIA COMMONWEALTH UNIVERSITY PO BOX 980461 RICHMOND VA 23298 546001758 501(C)(3) 31429 HTC CAPACITY BUILDING GRANT FOR GENETIC COUNSELING TRAVEL ASSISTANCE TO FAMILIES INVITED TO ANNUAL MEETING. 89 33338 KEVIN CHILD SCHOLARSHIP AWARD 1 1000 DOREEN MCMULLAN MCCARTHY MEMORIAL ACADEMIC AWARD 1 2500 JOSH GORDY H.O.P.E. FOUNDATION SCHOLARSHIP AWARD 1 1000 JOSH GODY EDUCATIONAL SCHOLARSHIP AWARD 1 1000 PART I, LINE 2: BASED ON THE NHF REQUIREMENTS ALL CHAPTERS THAT WERE AWARDED GRANTS PROVIDE QUARTERLY PROGRAM AND FINANCIAL REPORTS REGARDING THEIR GRANTS WITH US. ONLY AFTER SUBMISSION OF A QUARTERLY PROGRAM REPORT DESCRIBING THEIR PROGRESS IN COMPLETING DELINEATED TASKS AND COMPLETE FINANICIAL REPORTING NHF WILL RELEASE THE NEXT QUARTERLY PAYMENT FOR THE GRANT RECIPIENTS. THE FINAL PAYMENT IS HELD UNTIL A FULL FINAL SUMMARY REPORT IS HANDED IN, ALL TASKS HAVE BEEN ADDRESSED AND FINANCIAL STATEMENTS RECONCILED (GRANTS TO CHAPTERS). ALL GRANTEES FOR THE RESEARCH PROGRAMS MUST SUBMIT FINANCIAL REPORTS FROM THEIR INSTITUTION STATING THE PAYMENTS HAVE BEEN RECEIVED AND APPROPRIATE EXPENSES INCURRED. DEPENDING UPON THE AWARD, THESE REPORTS ARE EITHER DUE ON A SEMI-ANNUAL OR ANNUAL BASIS. SUBSEQUENT PAYMENTS AND DECISIONS REGARDING CONTINUATION OF MULTI-YEAR GRANTS ARE DEPENDENT UPON ANNUAL RECEIPT, REVIEW AND APPROVAL OF BUDGETS, FINANCIAL REPORTS, CONTINUATION APPLICATIONS AND SCIENTIFIC PROGRESS REPORTS. AS A CONDITION OF THEIR AWARD, ALL GRANTEES SIGN AN AGREEMENT WITH NHF TO ABIDE BY OUR ORGANIZATION'S GRANT POLICIES AND PROCEDURES, WHICH ALSO INCLUDES A DESCRIPTION OF AUTHORIZED AND UNAUTHORIZED EXPENSES. X X X X 0 1 0 0 0 0 0 1 0 VAL BIAS CHIEF EXECUTIVE OFFICER 308567 0 16883 0 1806 0 42176 0 28135 0 397567 0 0 0 JORDANA ZEGER CHIEF OPERATING OFFICER 191748 0 0 0 2713 0 12557 0 28103 0 235121 0 0 0 JOSEPH KLEIBER SENIOR V.P. OF CHAPTER SER 182171 0 5000 0 2561 0 18934 0 19949 0 228615 0 0 0 MARY ANN LUDWIG V.P. OF DEVELOPMENT 214913 0 0 0 2772 0 22026 0 10118 0 249829 0 0 0 NEIL FRICK V.P. OF RESEARCH & MEDICAL 138000 0 10000 0 402 0 13861 0 9849 0 172112 0 0 0 JOHN INDENCE V.P. OF MARKETING AND COMM 137482 0 10000 0 616 0 13861 0 9861 0 171820 0 0 0 SANDRA ROTELLINI V.P. OF CHAPTER DEVELOPMENT & EDUCAT 125301 0 10000 0 524 0 12715 0 9731 0 158271 0 0 0 MICHELLE RICE V.P. OF PUBLIC POLICY & STAKEHOLD RE 123336 0 10000 0 342 0 11967 0 27383 0 173028 0 0 0 PART I, LINE 3 THE BOARD OF DIRECTORS SETS THE COMPENSATION OF CEO AT HIRE AND THEREAFTER USES AN INDEPENDENT CONSULTANT'S ANALYSIS OF COMPARABLE SALARY SURVEYS(BIANNUALLY). THE CEO SETS COMPENSATION FOR KEY EMPLOYEES WITHIN A DESIGNATED SALARY RANGE WITH INPUT FROM HUMAN RESOURCES/COO AS WELL AS USING SALARY SURVEYS. PART I, LINE 4B PART I, LINE 4B: THE ORGANIZATION MAINTAINS A 457(B) PLAN. PART I, LINE 7 THE CEO SHALL BE ELIGIBLE TO RECEIVE AN ANNUAL BONUS OF UP TO 6% OF BASE SALARY BASED ON PERFORMANCE IN A CONTRACT YEAR. THE FORM AND AMOUNT OF ANY PERFORMANCE BONUS SHALL BE WITHIN THE BOARD'S DISCRETION. THE BONUS DETERMINATION WILL BE MADE PURSUANT TO A FORMALIZED REVIEW PROCESS CONDUCTED BY THE BOARD AND IS SPECIFIC TO MEETING GOALS. FORM 990, PART VI, SECTION A, LINE 6 THE ORGANIZATION HAS CHAPTER MEMBERS WHO ARE VOTING MEMBERS OF THE ORGANIZATION. AN ORGANIZATION WHOSE MISSION AND PURPOSE IS CONSISTENT WITH THE MISSION OF NHF MAY APPLY TO BE A CHAPTER MEMBER. THE CEO IS AUTHORIZED TO ACCEPT OR DENY CHAPTER MEMBER STATUS. FORM 990, PART VI, SECTION A, LINE 7A CHAPTER MEMBERS ARE ENTITLED TO VOTE FOR DIRECTORS FOR EACH OF THE VACANCIES TO BE FILLED DURING ELECTIONS. FORM 990, PART VI, SECTION B, LINE 11 A COPY OF FORM 990 IS CIRCULATED ELECTRONICALLY TO THE ORGANIZATION'S BOARD MEMBERS. THE FULL BOARD WILL HAVE THE OPPORTUNITY TO HAVE THE FORM 990 PRESENTED TO THEM BY THE AUDITOR BY CONFERENCE CALL PRIOR TO BEING SUBMITTED. THE CEO, COO AND CONTROLLER ARE ALSO PRESENT ON THE CALL. FORM 990, PART VI, SECTION B, LINE 12C BOARD MEMBERS DISCLOSE IN WRITING ANNUALLY AND VERBALLY AT THE BEGINNING OF EACH MEETING. EMPLOYEES DISCLOSE AT HIRE AND ANNUALLY. CEO/COO MANAGE CONFLICTS FOR EMPLOYEES. FORM 990, PART VI, SECTION B, LINE 15 THE BOARD OF DIRECTORS SETS THE COMPENSATION OF CEO AT HIRE AND THEREAFTER USES AN INDEPENDENT CONSULTANT'S ANALYSIS OF COMPARABLE SALARY SURVEYS(BIANNUALLY). THE CEO SETS COMPENSATION FOR KEY EMPLOYEES WITHIN A DESIGNATED SALARY RANGE WITH INPUT FROM HUMAN RESOURCES/COO AS WELL AS USING SALARY SURVEYS. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS AND CONFLICTS OF INTEREST AVAILABLE TO THE PUBLIC UPON REQUEST. THE ORGANIZATION MAKES ITS FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC ON ITS WEBSITE. FORM 990, PART XI, LINE 9: ADJUSTMENT FOR EXCESS EXPENSE ACCRUAL IN CONNECTION W/ARBITRATION 210,426.