2014-08-14T08:14:20-05:00 2013-12-31 221732349 WISS & COMPANY LLP 485C ROUTE 1 SOUTH SUITE 250 ISELIN NJ 08830 990 2013-01-01 135641857 NATIONAL HEMOPHILIA FOUNDATION NATI 2123283700 116 WEST 32ND STREET 11TH FL NEW YORK NY 10001 VAL BIAS CHIEF EXECUTIVE OFFICER 2123283700 2014-08-13 1 MICHAEL ANDRIOLA P00252682 7322839300 2013 2015-11-30 17:44:51Z VAL BIAS 116 WEST 32ND STREET 11TH FL NEW YORK NY 10001 17413718 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. 19 19 65 506 1289313 39297 12859589 14116476 1693672 1716117 144405 233634 -547129 -776897 14150537 15289330 552068 1051280 0 0 5145949 5691936 0 12375 836383 6326908 7123221 12024925 13878812 2125612 1410518 13303973 19463103 3803602 8196542 9500371 11266561 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 5606029 88100 426804 HEALTH EDUCATION AND TRAINING - THROUGH HANDI, NHF'S INFORMATION RESOURCE CENTER, CLOSE TO 3,000 REQUESTS WERE ANSWERED IN 2013. 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. IN CONJUNCTION WITH CDC AND MACRO INTERNATIONAL, HANDI CREATED 2 VIDEOS, ONE ON DISCLOSURE AND THE OTHER ON PARTICIPATING IN SPORTS ACTIVITIES. THESE VIDEOS WERE PRESENTED AT THE CDC BLOOD DISORDERS CONFERENCE ON MARCH 13, 2013. NHF ORGANIZED 2 INHIBITOR EDUCATION SUMMITS IN ENGLISH FOR PATIENTS AND FAMILIES EXPERIENCING THE COMPLICATION OF AN INHIBITOR. THE FIRST WAS JULY 11-14, 2013, IN SEATTLE, WA, WITH 100 FAMILIES ATTENDING AND 336 TOTAL PARTICIPANTS. THE SECOND WAS JULY 25-28, 2013, IN NASHVILLE, TN, WITH 102 FAMILIES AND 365 TOTAL PARTICIPANTS. NHF ORGANIZED AN INHIBITOR EDUCATION SUMMIT IN SPANISH FOR PATIENTS AND FAMILIES IN MIAMI, FL, ON MAY 31 - JUNE 2, 2013, WITH 22 FAMILIES AND 106 TOTAL PARTICIPANTS. PHYSICIAN REPRESENTATIVES FROM NHF'S MEDICAL AND SCIENTIFIC ADVISORY COUNCIL (MASAC) AND REPRESENTATIVES FROM NHF'S NURSING, SOCIAL WORK AND PHYSICAL THERAPY WORKING GROUPS DEVELOPED MORE THAN 40 EDUCATIONAL SESSIONS FOR NHF'S 2013 ANNUAL MEETING IN ANAHEIM, CA, WHICH PROVIDED BOTH CME AND CEU ACCREDITATION. THE PRIMARY GOALS OF 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. 2013 HIGHLIGHTS INCLUDED: PROVIDING FUNDS TO CHAPTERS FOR EDUCATIONAL AND SUPPORT ACTIVITIES FOR GIRLS AND WOMEN WITH BLEEDING DISORDERS; DISSEMINATING A TOOLKIT FOR CHAPTER OUTREACH ACTIVITIES TO SYMPTOMATIC WOMEN AND HEALTHCARE PROVIDERS; EDUCATING COLLEGE HEALTHCARE PROFESSIONALS ON THE SIGNS AND SYMPTOMS OF BLEEDING DISORDERS IN WOMEN TO INCREASE IDENTIFICATION OF WOMEN WHO ARE SYMPTOMATIC; PROVIDED FIVE EDUCATIONAL SESSIONS FOR FEMALE CONSUMERS AT NHF'S 2013 ANNUAL MEETING; AND PROVIDED WORKSHOPS 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. THE FOLLOWING WERE ACCOMPLISHED IN 2013 ON THE STEPS FOR LIVING WEBSITE: REDESIGNED WEBSITE TO ENHANCE USABILITY AND FUNCTIONALITY; LAUNCHED A NEW BASICS OF BLEEDING DISORDER SECTION THAT WAS ALSO TRANSLATED INTO SPANISH; PRODUCED 3 NEW VIDEOS, INCLUDING A SPANISH AND ENGLISH VERSION OF MY HTC AND ME AND "GOT QUESTIONS: STEPS FOR LIVING HAS ANSWERS." NHF PROVIDED 3 STEPS FOR LIVING "TRAIN-THE-TRAINER" PROGRAMS FOR STAFF AND HEALTHCARE PROVIDERS FROM 24 CHAPTERS ACROSS THE COUNTRY. NHF CONTINUED TO PRINT AND DISTRIBUTE MORE THAN 1,000 EDUCATIONAL PRINT MATERIALS, INCLUDING GUIDELINES FOR GROWING BROCHURE SERIES, A WELCOME KIT FOR NEWLY DIAGNOSED FAMILIES AND THE COLORING BOOK "MY HTC AND ME" IN SPANISH AND ENGLISH.THE NATIONAL HEMOPHILIA FOUNDATION 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 2013 NHF PROVIDED TWO TRAININGS TO THE 25 MEMBERS OF NYLI ON TOPICS INCLUDING PEER COACHING, PUBLIC SPEAKING, SOCIAL MEDIA AND CULTURAL COMPETENCE. NYLI MEMBERS WERE PROVIDED OPPORTUNITIES TO SERVE ON A VARIETY OF NHF ADVISORY GROUPS AND ONE MEMBER SERVED AS A NONVOTING MEMBER ON NHF'S BOARD OF DIRECTORS. NYLI MEMBERS PROVIDED 7 EDUCATIONAL SESSIONS, ADVOCATED ON BEHALF OF THEIR STATES IN WASHINGTON, DC, AT NHF'S WASHINGTON DAYS ADVOCACY EVENT, LED PEER EDUCATION PROGRAMS FOR TEENS AND FACILITATED 2 RAP SESSIONS AT NATIONAL MEETINGS. NHF ALSO LAUNCHED THE FUTURE ADVOCACY LEADERS PROGRAM AS PART OF NYLI, IN WHICH YOUNG ADULTS CAN STRENGTHEN THEIR LEADERSHIP SKILLS, LEARN THE KEYS TO SUCCESSFUL ADVOCACY AND PROVIDE YOUTH ADVOCACY WORKSHOPS AT LOCAL CHAPTER EVENTS. 2759469 158732 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 ADVOCACY EVENT, WHICH IS A GRASSROOTS EVENT THAT BRINGS PATIENTS AND THEIR FAMILIES TO WASHINGTON, DC, TO MEET WITH 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 DISORDERSNHF MANAGES 6 DISTINCT WEBSITES: HEMOPHILIA.ORG,STEPSFORLIVING.HEMOPHILIA.ORG, HEMAWARE.ORG, AND WEBSITES FOR THE HEMOPHILIA WALK, VICTORY FOR WOMEN AND INHIBITOR SUMMITS. IN 2013 THERE WAS AN 18.5% INCREASE IN WEB TRAFFIC TO HEMOPHILIA.ORG, WITH MORE THAN 474,400 TOTAL UNIQUE VISITORS. MORE THAN 488,200 EMAIL COMMUNICATIONS HAVE BEEN SENT THROUGH SUCH AVENUES AS: ENOTES, HEMAWARE EXPRESS, MEDICAL ALERTS, ADVOCACY ALERTS, MEDIA ALERTS, CHAPTER UPDATES AND DEVELOPMENT PLEAS. NHF HAS MORE THAN 10,200 LIKES ON FACEBOOK (20% INCREASE FROM PREVIOUS YEAR) AND MORE THAN 9,700 TWITTER FOLLOWERS (362% INCREASE FROM PREVIOUS YEAR). 1600533 238281 CHAPTER SERVICES - NHF'S CHAPTER SERVICES DEPARTMENT PROVIDES COMMUNITY SUPPORT BY HELPING ITS 52 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 2013 CHAPTER SERVICES HELD THREE REGIONAL LEADERSHIP SEMINARS OFFERING TRAINING ON ETHICAL ISSUES FOR NONPROFITS, HEALTHCARE FOR CHAPTERS, FUNDRAISING, AND ADVOCACY AND EDUCATIONAL INITIATIVES. 1024200 516167 RESEARCH - NHF AWARDED TWO NHF/BAXTER CLINICAL FELLOWSHIPS TO FELLOWS FROM THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL AND THE UNIVERSITY OF COLORADO DENVER. NHF AWARDED NHF/NOVO NORDISK CAREER DEVELOPMENT AWARD TO A RESEARCHER AT THE UNIVERSITY OF CALIFORNIA AT SAN DIEGO. THE NHF NURSING EXCELLENCE FELLOWSHIP WAS AWARDED TO A NURSE AT THE CHILDREN'S HOSPITALS AND CLINICS OF MINNESOTA FOR HER PROJECT, "TELEHEALTH VIDEOCONFERENCING FOR CHILDREN WITH HEMOPHILIA AND THEIR FAMILIES: A CLINICAL PROJECT." THE NHF SOCIAL WORK EXCELLENCE FELLOWSHIP WAS AWARDED TO TWO SOCIAL WORKERS AT RUSH HEMOPHILIA & THROMBOPHILIA CENTER-RUSH UNIVERSITY MEDICAL CENTER IN CHICAGO FOR THEIR PROJECT, "UNDERSTANDING THE ROLE OF RELIGIOSITY AND SPIRITUALITY IN ADOLESCENT PATIENTS WITH INHERITED BLEEDING DISORDERS." THE NHF PHYSICAL THERAPY EXCELLENCE FELLOWSHIP WAS AWARDED TO A PHYSICAL THERAPIST AT THE HEMOPHILIA CARE PROGRAM, PUGET SOUND BLOOD CENTER IN SEATTLE FOR HER PROJECT, "IDENTIFYING FALL RISK IN PATIENTS WITH HEMOPHILIA". 1024200 516167 10990231 1 1 0 1 0 0 0 0 0 1 1 1 0 0 1 1 1 0 0 0 0 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 103 0 1 65 1 1 1 0 0 0 0 1 1 0 0 0 0 X 19 19 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 116 WEST 32ND STREET 11TH FL NEW YORK NY 10001 JORGE DE LA RIVA CHAIR 10.00 X X 0 0 0 KENNETH TRADER VICE-CHAIR 10.00 X X 0 0 0 CAROL SIMONETTI SECRETARY 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 DIRECTOR 10.00 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 STEVE HELM DIRECTOR 10.00 X 0 0 0 KENNETH MOORE DIRECTOR 10.00 X 0 0 0 DAVID STERNBERG DIRECTOR 10.00 X 0 0 0 VAL BIAS CHIEF EXECUTIVE OFFICER 40.00 X 282644 0 71908 JORDANA ZEGER CHIEF OPERATING OFFICER 40.00 X 192840 0 33872 JOSEPH KLEIBER SENIOR V.P. OF CHAPTER SERVICES 40.00 X 184149 0 43792 MARY ANN LUDWIG V.P. OF DEVELOPMENT 40.00 X 216098 0 29949 NEIL FRICK V.P. OF RESEARCH & MEDICAL EDUCATION 40.00 X 138237 0 21910 JOHN INDENCE V.P. OF MARKETING AND COMMUNICATION 40.00 X 137031 0 21866 CHRISTA DARDAGANIAN DIRECTOR OF EDUCATION STRATEGY 40.00 X 131196 0 8288 SANDRA ROTELLINI DIRECTOR OF CHAPTER SERVICE 40.00 X 120092 0 19533 1402287 0 251118 10 0 1 0 PAM AM EQUITIES INC 18 EAST 50TH STREET 10TH FL NEW YORK NY 10022 RENT OF NYC OFFICE 447247 THE MAGAZINE GROUP 1707 L STREET NW 3RD FLOOR WASHINGTON DC 20036 PRODUCTION OF HEMAWARE 422288 SCHERER CLINICAL COMMUNICATIONS LLC 17 WEST PROSPECT STREET HONEYWELL NJ 08525 PROFESSIONAL SERVICES: ENDURING SYMPOSIU 222328 STRATEGIC MARKETING & MAILING INC 3002 N APOLLO DRIVE CHAMPAIGN IL 61822 DESIGN, LETTERSHOP AND PRINTING SERVICES 217792 CAVAROCCHI RUSCIO DENNIS ASSOCIATES L 600 MARYLAND AVE SW STE 835W WASHINGTON DC 20024 CONSULTANT-STRATEGIC SERVICES AND PUBLIC 185734 6 28248 1551464 863450 11673314 14116476 ADVERTISING 541800 1289313 1289313 EDUCATIONAL SEMINARS 611710 416957 416957 PUBLICATIONS 900099 9847 9847 1716117 157447 157447 1384973 1308786 76187 76187 76187 29913 1551464 815602 -785689 -785689 MISCELLANEOUS 611710 8792 8792 8792 15289330 435596 1289313 -552055 942136 942136 59144 59144 50000 50000 809206 607210 147611 54385 3763120 2727779 780713 254628 212422 179538 16399 16485 553368 486849 37021 29498 353820 311288 23671 18861 190337 5187 185150 13076 12503 573 183941 183941 12375 12375 27590 27590 1205840 777772 385717 42351 161964 130144 25152 6668 480280 310414 148907 20959 3081953 2958647 56737 66569 11150 8034 2340 776 35301 35201 100 UNRELATED BUSINESS INCO 10365 10365 STATIONERY AND PRINTING 855863 653358 13748 188757 EQUIPMENT RENTAL 537015 465282 60398 11335 POSTAGE AND SHIPPING 177305 80483 3003 93819 151241 42660 90337 18244 13878812 10990231 2052198 836383 6417771 8616494 798526 1680631 599427 860550 124358 132967 1379040 1352611 24596 26429 5191616 7951982 147679 194050 13303973 19463103 1367682 1862773 2280759 6152418 155161 181351 3803602 8196542 X 6481952 7966957 2768419 3049604 250000 250000 9500371 11266561 13303973 19463103 1410518 355147 525 0 X 0 1 X 1 1 1 X 4994445 8197715 9705585 12859589 14116476 49873810 4994445 8197715 9705585 12859589 14116476 49873810 29439064 20434746 83065 162097 157760 151910 157447 712279 147971 86234 40297 274502 650680 319600 343205 8792 1322277 52182868 3397614 0.39160 0.44640 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 1 26208 0 0 1 229181 1 27725 0 283114 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. 287878 26933 314811 271335 16543 287878 268750 2585 271335 261250 7500 268750 257500 3750 261250 0.79410 0.20590 0 0 175302 168149 7153 187759 185373 2386 1015979 999089 16890 26429 CORPORATE BONDS 4343959 F COMMON STOCKS 1532953 F EXCHANGE TRADED EQUITY FUNDS 2075070 F 7951982 DEFERRED RENT 40451 457B PLAN PAYABLE 140900 181351 X 15666762 355147 22285 377432 15289330 0 15289330 13900572 21760 21760 13878812 0 13878812 PART V, LINE 4: THE FOUNDATION TEMPORARILY RESTRICTED $26,933 IN 2013 REPRESENTING INCOME FROM THE ENDOWMENT FUND TO BE USED FOR A RESEARCH GRANT. THE $64,811 UNDER TEMPORARILY RESTRICTED ASSETS REPRESENTS INCOME ACCUMULATION FROM INCEPTION JULY 1, 2008 TO DECEMBER 31, 2013. 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 2013 AND 2012 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 FOR 2010 THROUGH 2012 ARE OPEN TO EXAMINATION BY THE IRS AS OF DECEMBER 31, 2013. UNRELATED BUSINESS INCOME TAX FOR THE YEARS ENDED DECEMBER 31, 2013 AND 2012 AMOUNTED TO $10,365 AND $27,244, RESPECTIVELY. 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 1 0 0 0 0 0 0 WALK-A-THON 1061736 1061736 1455 42229 8212 2800 522907 SOIREE 392329 377981 14348 2500 52285 0 0 83980 6 127312 111747 15565 1624 44344 8781 1040 43445 1581377 1551464 29913 5579 138858 16993 3840 650332 815602 -785689 1 UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 104 AIRPORT DR STE 2200 CB 1350 CHAPEL HILL NC 27599 566001393 501(C)(3) 64921 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS FOR 2 INDIVIDUALS UNIVERSITY OF TEXAS- HOUSTON HEALTH SCIENCE POBOX 203382 HOUSTON TX 77216 741761309 14063 INSURANCE, CAREER FOCUSED PROGRAMS, PATIENCE ASSISTANCE FOR CAREER/EDUCATIONAL NEEDS BLOOD CENTER OF WISCONSIN INC PO BOX 78961 MILWAUKEE WI 53278 390807235 501(C)(3) 21000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION AND RESEARCH IN BLEEDING AND CLOTTING DISORDERS DMC EDUCATION & RESEARCH 4201 ST ANTTOINE 9C/UHC DETROIT MI 48201 382562709 501(C)(3) 47367 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS BLEEDING DISORDERS ASSN OF NE NEW YORK PO BOX 947 172B COLUMBIA TURNPIKE RENSSELAER NY 12144 222519156 501(C)(3) 24250 ADVOCACY CAPACITY BUILDING AND STAFFING ASSISTANCE FOR CHAPTER HEMOPHILIA COUNCIL OF CALIFORNIA 1507 21ST STREET STE 103 SACRAMENTO CA 95811 680182998 501(C)(3) 52000 SUPPORT AN EXPANSION IN HCC'S ADVOCACY INFRASTRUCTURE TO ASSIST THE COUNCIL IN ITS EFFORTS TO ACCESS CARE TO THOSE AFFECTED BY BLEEDING DISORDERS IN THE STATE OF CALIFORNIA. HAWAII HEMOPHILIA FOUNDATION 45-103B WAILELE RD KANEOHE HI 96744 271851936 501(C)(3) 25500 STAFFING ASSISTANCE FOR CHAPTER HEMOPHILIA ASSN OF CAPITAL AREA 10560 MAIN STREET STE 419 FAIRFAX VA 22030 541702561 501(C)(3) 10920 CHAPTER-VICTORY FOR WOMAN PROGRAM AND STAFFING ASSISTANCE FOR CHAPTER HEMOPHILIA OF IOWA INC 58N 5TH STREET PO BOX 415 CENTRAL CITY IA 52214 421334948 501(C)(3) 16231 STAFFING ASSISTANCE FOR CHAPTER ROCKY MTN HEMOPHILIA & BLEEDING DISORDERS 2100 FAIRWAY DR STE 107 BOZEMAN MT 59715 810533720 501(C)(3) 19250 CHAPTER-VICTORY FOR WOMAN PROGRAM AND STAFFING ASSISTANCE FOR CHAPTER TEXAS CENTRAL HEMOPHILIA ASSN 12700 HILLCREST RD STE 191 DALLAS TX 75230 751187148 501(C)(3) 57500 ADVOCACY CAPACITY BUILDING AND STAFFING ASSISTANCE FOR CHAPTER THE MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK ROAD PO BOX 26509 MILWAUKEE WI 53226 390806261 501(C)(3) 100000 CLINICAL RESEARCH FELLOWSHIP PROMOTIN INNOVATION IN BLEEDING AND CLOTTING DISORDERS VANDERBILT UNIVERSITY MEDICAL CTR 2301 VANDERBILT PLACE NASHVILLE TN 37235 620476822 501(C)(3) 24800 EXPAND CLINICAL HOURS AND GEOGRAPHIC AREA FOR WOMAN WITH BLEEDING DISORDERS ST LUKE'S HEMOPHILIA CENTER 100 E IDAHO STREET BOISE ID 83712 820161600 501(C)(3) 15000 THERAPY FOR ALL LIFE STAGES, INCLUDING THE AGING POPULATION N DAKOTA HEMOSTASIS TROMBOSIS TREATMENT 520 MAIN STREET SUITE 700 FARGO ND 58102 450398104 501(C)(3) 10595 SURVEY OF PATIENT KNOWLEDGE AND ATTITUDES; COORDINATE CARE WITH EDUCATORS, SCHOOL NURSES, DENTISTS, ETC VIRGINIA COMMONWEALTH UNIVERSITY PO BOX 980461 RICHMOND VA 23292 546001758 501(C)(3) 10476 GENETIC COUNSELING HEMOPHILIA THROMBOSIS TREATMENT CTR HAWAII 55 MERCHANT STREET 26TH FLOOR HONOLULU HI 96813 990246364 501(C)(3) 7850 PATIENT OUTREACH TO REMOTE AREAS UNIVERSITY HOSPITALS CASE MEDICAL CTR 11100 EUCLID AVE MAILSTOP 6054 CLEVELAND OH 44106 340714775 501(C)(3) 7800 IMPLEMENT SHARED MEDICAL APPOINTMENTS PROGRAM FOR PEDIATRIC POPULATION AND PATIENT ASSISTANCE FOR TRANSPORTATION CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVE WASHINGTON DC 20010 521640403 501(C)(3) 7500 ADOLESCENT TRANSITION CLINIC SANGRE DE ORO INC 1601 VALDEZ DRIVE NE ALBUQUERQUE NM 87112 850378433 501(C)(3) 7024 STAFFING ASSISTANCE FOR CHAPTER BLEEDING DISORDER OF WASHINGTON 9639 FIRDALE AVE STE A EDMONDS WA 98020 916068857 501(C)(3) 9249 STAFFING ASSISTANCE FOR CHAPTER HEMOPHILIA FOUNDATION OF OREGON 10940 SW BARNES RD 129 PORTLAND OR 97225 930551733 501(C)(3) 8840 STAFFING ASSISTANCE FOR CHAPTER ALASKA HEMOPHILIA ASSOCIATION 3340 PROVIDENCE DRIVE STE A352 ANCHORAGE AK 99508 943143226 501(C)(3) 11250 STAFFING ASSISTANCE FOR CHAPTER HEMOPHILIA CTR AT OREGON HEALTH & SCIENCE 707 SW GAINES STREET PORTLAND OR 97239 237083114 501(C)(3) 5000 FUNDING FOR PSYCHOLOGY FELLOWSHIPS AND SURVEYS SOUTHWEST OHIO HEMOPHILIA FOUNDATION 3131 SOUTH DIXIE DRIVE SUITE 103 MORAINE OH 45439 311527065 501(C)(3) 22000 ADVOCACY CAPACITY BUILDING FLORIDA HEMOPHILIA ASSOCIATION 915 MIDDLE RIVER DR STE 421 FT LAURDERDALE FL 33304 592072352 501(C)(3) 5700 ADVOCACY STRATEGIC PLANNING INITIATIVE VIRGINIA HEMOPHILIA FOUNDATION PO BOX 188 MIDLOTHIAN VA 23113 541183181 501(C)(3) 11055 CHAPTER-VICTORY FOR WOMAN PROGRAM NORTHERN OHIO HEMOPHILIA FOUNDATION C/O LYNN CAPRETTO 5000 ROCKSIDE RD SUITE 230 INDEPENDENCE OH 44131 341018501 501(C)(3) 10879 CHAPTER-VICTORY FOR WOMAN PROGRAM AND STAFFING ASSISTANCE HEMOPHILIA FOUNDATION OF MICHIGAN 1921 W MICHIGAN AVE YPSILANTI MI 48197 381905673 501(C)(3) 10350 CHAPTER-VICTORY FOR WOMAN PROGRAM TULANE UNIV SCHOOL OF MEDICINE 1430 TULANE AVE CAMPUS MAILBOX TB - 31 NEW ORLEANS LA 70112 720423889 501(C)(3) 96535 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) 70000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS UNIVERSITY OF COLORADO DENVER 2199 S UNIVERSITY BLVD DENVER CO 80210 840404231 501(C)(3) 37986 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS UNIVERSITY OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE LA JOLLA CA 92093 956006144 501(C)(3) 35000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION AND RESEARCH IN BLEEDING AND CLOTTING DISORDERS CHILDREN'S HOSPITAL AND CLINICS OF MINNESOTA 2525 CHICAGO AVE MINNEAPOLIS MN 55404 411814223 501(C)(3) 13211 SOOZIE COURTER NURSING EXCELLENCE SCHOLARSHIP PUGET SOUND BLOOD CENTER ATTN CASH RECEIPTS 921 TERRY AVE SEATTLE WA 98104 911019655 501(C)(3) 10000 PHYSICAL THERAPIST EXCELLENCE FELLOWSHIP RUSH UNIVERSITY MEDICAL CTR 1653 W CONGRESS PARKWAY CHICAGO IL 60612 362174823 501(C)(3) 10000 SOCIAL WORKERS' EXCELLENCE FELLOWSHIP UNIVERSITY OF SOUTHERN CALIFORNIA 191 MONTOUR RUN ROAD CORAOPOLIS PA 15108 951642394 501(C)(3) 10000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS 37 TRAVEL ASSISTANCE TO FAMILIES INVITED TO ANNUAL MEETING. 81 34400 KEVIN CHILDS SCHOLARSHIP AWARD 2 1500 DOREEN MCMULLAN MCCARTHY MEMORIAL ACADEMIC AWARD 1 2500 ACADEMIC SCHOLARSHIP 1 2500 EMERGENCY FINANCIAL ASSISTANCE PROVIDED TO INDIVIDUALS WITH HEMOPHILIA OR OTHER BLOOD-RELATED DISEASES. 56 18244 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 WILL NHF 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 0 0 VAL BIAS CHIEF EXECUTIVE OFFICER 276484 0 5000 0 1160 0 46381 0 26925 0 355950 0 0 0 JORDANA ZEGER CHIEF OPERATING OFFICER 189197 0 1000 0 2643 0 8446 0 26803 0 228089 0 0 0 JOSEPH KLEIBER SENIOR V.P. OF CHAPTER SERVICES 180654 0 1000 0 2495 0 18367 0 26750 0 229266 0 0 0 MARY ANN LUDWIG V.P. OF DEVELOPMENT 212326 0 1000 0 2772 0 21691 0 9656 0 247445 0 0 0 NEIL FRICK V.P. OF RESEARCH & MEDICAL EDUCATION 133857 0 4000 0 380 0 13679 0 9273 0 161189 0 0 0 JOHN INDENCE V.P. OF MARKETING AND COMMUNICATION 135591 0 1000 0 440 0 13650 0 9258 0 159939 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. 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 X, LINE 9 AND LINE 15 CERTAIN AMOUNTS PREVIOUSLY REPORTED HAVE BEEN RECLASSIFIED TO CONFORM TO CURRENT YEAR PRESENTATION PER THE AUDITED FINANCIAL STATEMENTS. THE BEGINNING BALANCE FOR PREPAID EXPENSES HAS BEEN RESTATED TO REFLECT A RECLASSIFICATION OF BOTH 457B PLAN ASSETS OF $95,041 AND SECURITY DEPOSITS OF $52,638 TO "OTHER ASSETS". THIS RESULTS IN A DECREASE IN PREPAID EXPENSES OF $147,679 ON LINE 9 AND A CORRESPONDING INCREASE TO LINE 15, "OTHER ASSETS". FORM 990, PART X, LINE 25 CERTAIN AMOUNTS PREVIOUSLY REPORTED HAVE BEEN RECLASSIFIED TO CONFORM TO CURRENT YEAR PRESENTATION PER THE AUDITED FINANCIAL STATEMENTS. SUCH CHANGES WERE LIMITED TO REFLECTING THE ASSET AND LIABILITY PERTAINING TO 457(B) PLAN AT GROSS AMOUNTS ON THE STATEMENTS OF FINANCIAL POSITION. SUCH RECLASSIFICATION HAD NO IMPACT ON THE RESULTS OF OPERATIONS ON EITHER YEAR PRESENTED. THE BEGINNING BALANCE ON LINE 25, OTHER LIABILITIES, WAS INCREASED BY $95,041 WHICH REPRESEENTS THE 457(B) LIABILITY.