2021-11-08T08:51:44-06:00 2020-12-31 271728945 PKF O'CONNOR DAVIES LLP 20 COMMERCE DRIVE SUITE 301 CRANFORD NJ 070163618 990 2020-01-01 135641857 NATIONAL HEMOPHILIA FOUNDATION NATI 2123283700 7 PENN PLAZA NO 1204 NEW YORK NY 10001 PETER HARVEY CHIEF BUSINESS OFFICER 2123283700 2021-11-03 1 PETER HARVEY 999009999 GARRETT M HIGGINS P00543209 9082726200 2021-11-03 0 AAL1 IAL1 2020 2022-09-23 18:48:47Z PETER HARVEY 7 PENN PLAZA NO 1204 NEW YORK NY 10001 30796863 0 X WWW.HEMOPHILIA.ORG X 1948 NY THE NATIONAL HEMOPHILIA FOUNDATION (NHF) IS DEDICATED TO FINDING CURES FOR INHERITABLE BLOOD DISORDERS AND TO ADDRESSING AND PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH RESEARCH, EDUCATION, AND ADVOCACY ENABLING PEOPLE AND FAMILIES TO THRIVE. 13 13 83 1029 1234783 105704 26168507 19810154 1168043 1244383 877815 1176717 -961214 -746050 27253151 21485204 2067584 2370371 0 0 9216546 9062753 0 0 749521 11094103 7604561 22378233 19037685 4874918 2447519 33540186 38811644 4290536 5491167 29249650 33320477 X THE NATIONAL HEMOPHILIA FOUNDATION (NHF) IS DEDICATED TO FINDING CURES FOR INHERITABLE BLOOD DISORDERS AND TO ADDRESSING AND PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH RESEARCH, EDUCATION, AND ADVOCACY ENABLING PEOPLE AND FAMILIES TO THRIVE. 0 0 5365147 650544 COMMUNITY SERVICES NHF'S PUBLIC POLICY DEPARTMENT WORKS TO ADVOCATE FOR POLICIES THAT PROMOTE THE HEALTH, SAFETY, RIGHTS AND ACCESS TO CARE FOR PEOPLE WITH INHERITABLE BLOOD DISORDERS BY EDUCATING FEDERAL AND STATE LAWMAKERS, OTHER GOVERNMENT AGENCIES AND OFFICIALS, AS WELL AS 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. THROUGH THE STATE-BASED ADVOCACY PROGRAM, NHF AWARDS GRANTS TO CHAPTERS, COMPETITIVELY, TO SUPPORT THEIR ADVOCACY EFFORTS. SUCCESSFUL GRANT RECIPIENTS ARE REQUIRED TO ATTEND SEVERAL VIRTUAL OR IN-PERSON TRAINING EVENTS ANNUALLY, HOLD REGULAR ADVOCACY COMMITTEE MEETINGS, INCLUDE NHF STAFF IN STATE ADVOCACY EVENTS, PROVIDE A MIDYEAR PROGRESS REPORT, COLLECT, SUBMIT SPECIFIED PROGRAM METRICS QUARTERLY, HOST A STAKEHOLDER PLANNING MEETING, AND SUBMIT A FINAL REPORT AT YEAR'S END.MEMBERS OF THE INHERITABLE BLOOD DISORDERS COMMUNITY THROUGHOUT THE COUNTRY ARE ENCOURAGED TO PARTICIPATE IN NHF'S ANNUAL WASHINGTON DAYS PROGRAM, WHICH IS A GRASSROOTS ADVOCACY EVENT THAT BRINGS PATIENTS AND THEIR FAMILIES TO WASHINGTON, D.C. TO MEET WITH THEIR MEMBERS OF CONGRESS AND EDUCATE THEM ABOUT THE DISORDERS IMPACTING THE COMMUNITY. CONSUMERS ARE ALSO ENCOURAGED TO ATTEND STATE ADVOCACY DAYS AT THEIR LOCAL STATE CAPITAL. NHF ALSO PROVIDES EDUCATIONAL OPPORTUNITIES FOR PAYERS TO HELP THEM BETTER UNDERSTAND THE UNIQUE HEALTHCARE NEEDS OF THOSE AFFECTED BY BLOOD DISORDERS, INCLUDING LIVE PRESENTATIONS, WEBINARS, ONLINE EDUCATIONAL MODULES, AND A JOINT COLLABORATIVE BRINGING TOGETHER PAYERS, MEDICAL PROVIDERS AND PATIENTS. 4400637 153762 9600 HEALTH EDUCATION AND TRAININGSIN 2020, HANDI, NHF'S INFORMATION RESOURCE CENTER, ANSWERED 701 REQUESTS FOR INFORMATION IN A WIDE RANGE OF SUBJECT AREAS THAT INCLUDED HEMOPHILIA, VON WILLEBRAND DISEASE, GENE THERAPY, RARE BLEEDING DISORDERS, HEALTH COVERAGE, INTERNATIONAL REQUESTS, QUESTIONS REGARDING PSYCHOSOCIAL ISSUES, AND VERY EARLY STAGE COVID-19 PANDEMIC REQUESTS. HANDI ALSO DISTRIBUTED OVER 4,155 NHF EDUCATIONAL PUBLICATIONS TO INDIVIDUALS, LOCAL CHAPTERS, AND HTCS.IN COLLABORATION WITH MEDSCAPE EDUCATION, NHF OFFERED 4 EDUCATIONAL PROGRAMS FOR HEALTHCARE PROVIDERS IN 2020, REACHING OVER 10,000 LEARNERS THROUGH ONLINE OFFERINGS ON GENE THERAPY FOR HEMOPHILIA AND EMERGENCY DEPARTMENT MANAGEMENT FOR CONTINUING EDUCATION CREDIT. THESE INCLUDE EVALUATION AND MANAGEMENT OF HEMOPHILIA IN THE EMERGENCY DEPARTMENT; MOVING BEYOND FACTOR: SHIFTING THE PARADIGM IN HEMOPHILIA THROUGH GENE THERAPY; NEWLY LAUNCHED MEDSCAPE ACTIVITY LOOKS AT GENE THERAPY AND NURSING; NEW MEDSCAPE ACTIVITY INCLUDES LATEST GENE THERAPY CLINICAL TRIAL UPDATES.NHF ALSO SUCCESSFULLY EXTENDED THE ACCREDITATION PERIOD UNTIL OCTOBER 31, 2020, FOR THREE EDUCATIONAL WEBINARS FOCUSED ON WOMEN WITH INHERITABLE BLOOD DISORDERS. JOINTLY PROVIDED BY NHF, IMPACT EDUCATION, AND POSTGRADUATE INSTITUTE FOR MEDICINE, THIS WEBINAR SERIES WAS TARGETED TO PRIMARY CARE PHYSICIANS, OBSTETRICIANS/GYNECOLOGISTS, REGISTERED NURSES/NURSE PRACTITIONERS, DENTISTS, OTHER SPECIALISTS AND ALLIED HEALTH PROFESSIONALS WORKING OUTSIDE THE HEMOPHILIA TREATMENT CENTER NETWORK OR OUTSIDE THE SPECIALTY OF HEMATOLOGY. "AN INTRODUCTION TO THE RECOGNITION, APPROPRIATE DIAGNOSIS, AND TIMELY MANAGEMENT OF VWD AND OTHER BLEEDING DISORDERS AMONG WOMEN IN NON-HEMATOLOGY HEALTH CARE SETTINGS" (SUPPORTED BY AN INDEPENDENT GRANT FROM SHIRE, AS WELL AS A COOPERATIVE GRANT FUNDED BY CDC). "ADVANCED CONSIDERATIONS FOR THE RECOGNITION, APPROPRIATE DIAGNOSIS, AND TIMELY MANAGEMENT OF VWD AND OTHER BLEEDING DISORDERS AMONG WOMEN IN NON-HEMATOLOGY HEALTH CARE SETTINGS" (SUPPORTED BY AN INDEPENDENT GRANT FROM SHIRE, AS WELL AS A COOPERATIVE GRANT FUNDED BY CDC). "IMPROVING OUTCOMES FOR FEMALES WITH BLEEDING DISORDERS IN NON-HEMATOLOGY HEALTHCARE SETTINGS" (SUPPORTED BY AN INDEPENDENT GRANT FROM NOVO NORDISK, INC., AS WELL AS A COOPERATIVE GRANT FUNDED BY CDC).DESIGNED TO INCREASE THE KNOWLEDGE OF HEALTHCARE PROVIDERS ON THE SYMPTOMS AND TREATMENT OPTIONS FOR WOMEN WITH BLEEDING DISORDERS, A TOTAL OF 199 INDIVIDUALS COMPLETED THE THREE WEBINARS IN THE RE-ACCREDITED PERIOD, BRINGING THE GRAND TOTAL SINCE LAUNCH, TO 9,122 PARTICIPANTS OVERALL WITH 467 WEBINAR COMPLETERS, AND 95% REPRESENTING PROVIDERS PRACTICING OUTSIDE THE FIELD OF HEMATOLOGY. 84% OF COMPLETERS REPORTED PLANS TO IMPLEMENT CHANGES TO THEIR PRACTICE OR THAT THE INFORMATION SHARED REINFORCED THEIR CURRENT PRACTICE. AND AMONG THOSE COMPLETERS, AN ESTIMATED 19,760 PATIENTS WOULD BENEFIT FROM THEIR INCREASED KNOWLEDGE AND COMPETENCE BECAUSE OF THIS ACTIVITY.NHF PROVIDED FUNDING AND CREATED EDUCATIONAL CONTENT FOR THOSE WITH RARE FACTOR DEFICIENCIES AND PLATELET DISORDERS AND THEIR FAMILIES VIRTUALLY AT NHF'S 2020 RARE BLEEDING DISORDERS CONFERENCE, SERVING OVER 100 ATTENDEES. NHF ALSO ORGANIZED A VIRTUAL NATIONAL INHIBITOR EDUCATION SUMMIT AND A VIRTUAL SPANISH INHIBITOR SUMMIT, FOR PATIENTS AND FAMILIES EXPERIENCING THE COMPLICATION OF AN INHIBITOR. THESE MULTI-DAY NATIONAL SUMMITS PROVIDED EDUCATION AND PEER CONNECTIONS FOR A TOTAL OF 200 PARTICIPANTS.THE PRIMARY GOALS OF THE NATIONAL HEMOPHILIA FOUNDATION'S (NHF'S) VICTORY FOR WOMEN AND BETTER YOU KNOW PROGRAMS ARE: 1) TO INCREASE AWARENESS TO FACILITATE EARLY AND ACCURATE DIAGNOSES; AND 2) TO PROVIDE AFFECTED WOMEN WITH EDUCATION AND SUPPORT. 2020 HIGHLIGHTS INCLUDED: TRAINING SEVEN COMMUNITY MEMBERS AS BETTER YOU KNOW ADVOCATES TO DO OUTREACH AND PIVOTING TO VIRTUAL PROGRAMMING DURING COVID. THESE PROGRAMS ALSO INCLUDED AN EDUCATIONAL TRACK FOR FEMALE CONSUMERS AT THE NHF 2020 BLEEDING DISORDERS CONFERENCE AND PROVIDING WORKSHOPS/WEBINARS FOR CONSUMERS AT CHAPTER EDUCATION DAYS AND WOMEN'S RETREATS. IN ADDITION, IN 2020, OVER 3,400 WOMEN TOOK THE BETTER YOU KNOW RISK ASSESSMENT TOOL AND 80% HAD SYMPTOMS OF A BLEEDING DISORDER AND OVER 5,400 VISITED VICTORYFORWOMEN.ORG.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 2020, STEPSFORLIVING.HEMOPHILIA.ORG HAD OVER 234,000 SESSIONS AND IS CURRENTLY UNDERGOING A WEBSITE REDESIGN AND REWRITE THAT SHOULD LAUNCH IN LATE 2021. NHF'S EDUCATION FOR EMPOWERMENT PROGRAM BRINGS WORKSHOPS OUT TO LOCAL CHAPTER AND HTC EVENTS AND IN 2020 HAD TO QUICKLY SWITCH TO ALSO PROVIDE AS WEBINARS VIRTUALLY DUE TO COVID. NHF FACILITATED 61 WORKSHOPS/WEBINARS, WITH OVER 850 PARTICIPANTS IN 2020. NEW IN 2020 WERE MULTIPLE TOPICS ON MENTAL HEALTH FOR CHAPTERS TO REQUEST. 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 2020, NHF PROVIDED TRAININGS TO THE 25 MEMBERS OF NYLI ON TOPICS INCLUDING PUBLIC SPEAKING, ADVOCACY, NON-PROFIT MANAGEMENT AND FUNDRAISING. NYLI MEMBERS PROVIDED EDUCATIONAL SESSIONS, ADVOCATED ON BEHALF THEIR STATES WASHINGTON, D.C., LED PEER EDUCATION PROGRAMS FOR TEENS, AND FACILITATED SESSIONS AT NATIONAL MEETINGS. NHF DEVELOPED NUMEROUS EDUCATIONAL COMPONENTS TO ITS GENE AND INNOVATIVE THERAPIES PROGRAMMING TO ENSURE THAT COMMUNITY MEMBERS ARE AWARE OF THE LATEST TREATMENTS IN THE PIPELINE AND HOW TO HAVE CONVERSATIONS WITH THEIR HEALTHCARE PROVIDERS FOR THE BEST TREATMENT DECISIONS. THE WEBPAGES HAD OVER 9,000 HITS, AND THE WEBINARS HAD OVER 1,600 ATTENDEES. 2945656 1473288 RESEARCHNHF AWARDED TWO (2) NHF/TAKEDA CLINICAL FELLOWSHIPS IN 2020. ONE FELLOWSHIP AWARD WAS BESTOWED TO DR. MARY MCGRATH OF THE UNIVERSITY OF MICHIGAN, AND THE OTHER AWARD WENT TO DR. PATRICK ELLSWORTH OF THE UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL. THE NHF-TAKEDA CLINICAL FELLOWSHIP PROGRAM PROVIDES UP TO $100,000 PER YEAR FOR TWO YEARS TO AT LEAST TWO FELLOWS CHOSEN FROM AMONG NOMINATIONS SUBMITTED BY MENTORS/DIRECTORS FROM APPROVED FELLOWSHIP TRAINING SITES. THE NHF NURSING EXCELLENCE FELLOWSHIP WAS AWARDED TO NURSE AMANDA GREENE OF EMORY UNIVERSITY & CHILDREN'S HEALTHCARE OF ATLANTA IN ATLANTA, GEORGIA FOR HER PROJECT, "RETROSPECTIVE CHART REVIEW OF JOINT OUTCOMES AND HOSPITAL UTILIZATION FOR PERSONS WITH HEMOPHILIA A (WITH AND WITHOUT INHIBITORS) WHO WERE SWITCHED TO EMICIZUMAB FOR TREATMENT PROPHYLAXIS." THE NHF SOCIAL WORK EXCELLENCE FELLOWSHIP WAS AWARDED TO SOCIAL WORKER KATHALEEN SCHNUR AT THE HEMOPHILIA CENTER OF WESTERN PENNSYLVANIA FOR HER PROJECT TO SURVEY SOCIAL WORKERS AT HEMOPHILIA TREATMENT CENTERS (HTC) REGARDING THEIR ROLES IN THE HTC MODEL. THE NHF PHYSICAL THERAPY EXCELLENCE FELLOWSHIP WAS AWARDED TO PHYSICAL THERAPIST NANCY DURBEN AT THE OREGON HEALTH AND SCIENCE UNIVERSITY FOR HER PROJECT, "MINDFUL YOGA FOR PEOPLE WITH BLEEDING DISORDERS AND CHRONIC PAIN."A TOTAL OF THREE (3) NHF JUDITH GRAHAM POOL POSTDOCTORAL RESEARCH FELLOWSHIPS WERE AWARDED TO THE FOLLOWING INSTITUTIONS AND RESEARCHERS RESPECTIVELY: DR. XUEJIE CHEN AT THE UNIVERSITY OF NORTH CAROLINA CHAPEL HILL FOR THE PROJECT "INCREASING THE EFFICACY OF PROPHYLACTIC INFUSED FIX IN HEMOPHILIA B PATIENTS BY MANIPULATING ITS BINDING TO COLLAGEN IV", DR. KAUSHIK DAS, AT THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT TYLER FOR THE PROJECT "THE ROLE OF FVIIA-RELEASED ENDOTHELIAL EXTRACELLULAR VESICLES IN HEMOPHILIA THERAPY", AND DR. JHANSI MAGISETTY AT THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT TYLER FOR THE PROJECT, "THE ROLE OF EPCR-FVIIA IN THE PATHOGENESIS AND TREATMENT OF HEMOPHILIC ARTHROPATHY."THE INNOVATIVE INVESTIGATOR RESEARCH AWARD (IIRA) PROVIDES RESEARCH AWARDS TO ANY HEALTH CARE PROVIDER ON A MULTI-DISCIPLINARY TEAM WITHIN THE HEMOPHILIA TREATMENT CENTER (HTC) NETWORK FOR INNOVATIVE PROJECTS THAT PROMOTE THE DEVELOPMENT OF NOVEL TECHNOLOGIES AND/OR THERAPIES TO ADVANCE THE FIELD OF BLEEDING DISORDERS RESEARCH. ONE IIRA WAS AWARDED IN 2020 TO THE FOLLOWING INSTITUTION AND RESEARCHER RESPECTIVELY: DR. COURTNEY THORNBURG AT UNIVERSITY OF CALIFORNIA, SAN DIEGO DEPARTMENT OF PEDIATRIC HEMATOLOGY/ONCOLOGY FOR THE PROJECT "GENE THERAPY FOR HEMOPHILIA: PATIENT PREFERENCES AND SHARED-DECISION MAKING." ONE CAREER DEVELOPMENT AWARD (CDA) WAS AWARDED TO DR. ZE ZHENG FOR THE PROJECT TITLED, "REDUCING SEVERE BLEEDING SYMPTOMS IN HEMOPHILIA BY LOWERING FIBRINOLYSIS". THIS AWARD IS FOR AN ESTABLISHED INVESTIGATOR, PREFERABLY AT THE ASSISTANT PROFESSOR LEVEL OR ABOVE, WHO HAS DEMONSTRATED A COMMITMENT TO BLEEDING DISORDERS RESEARCH. IN ADDITION, NHF CONTINUED TO SUPPORT SEVERAL RESEARCH INITIATIVES:CAMP SURVEY: THIS PROJECT IDENTIFIED GAPS IN CARE AND UNDERSTAND HOW CAMPS FUNCTION AND THE ROLE THEY SERVE IN THE COMMUNITY. PAIN PRACTICES SURVEY: THIS HELPED UNDERSTAND HOW PAIN IS MANAGED WITHIN THE BLEEDING DISORDERS COMMUNITY AND HOW THE HTC SYSTEM HAS ADAPTED TO THE 2016 CDC PAIN GUIDELINES. TELEGENETIC SURVEY: THIS SURVEY SERVED WOMEN AND ADOLESCENT GIRLS WHO PARTICIPATED IN THE MY LIFE OUR FUTURE WOMEN'S PILOT STUDY AND RECEIVED GENETIC TESTING BUT NOT GENETIC COUNSELING VIA TELEMEDICINE. RESULTS WERE TABULATED AND PRESENTED AT THE WORLD FEDERATION OF HEMOPHILIA CONGRESS IN KUALA LAMPUR, MALAYSIA, IN 2020.CVR (COMMUNITY VOICES IN RESEARCH): A PATIENT POWERED REGISTRY INTENDED TO CAPTURE A 360-DEGREE VIEW OF LIVING WITH A BLEEDING DISORDER, DIRECTLY FROM THOSE AFFECTED AND THEIR RELATIVES TO ENHANCE THE ABILITY OF RESEARCHERS TO IMPROVE QUALITY OF LIFE (QOL). CVR EXAMINES CURRENT TREATMENTS, IDENTIFIES RESEARCH QUESTIONS IMPORTANT TO COMMUNITY MEMBERS, AND DISCOVERS TRANSFORMATIONAL THERAPIES. QI PROJECT: THIS PILOT PROGRAM REFINES A LOGGING PLATFORM BASED ON FEEDBACK FROM THE NORTHERN REGIONAL BLEEDING DISORDERS CENTER (NRBDC) AND WESTERN NEW YORK BLOODCARE (WNY) HTC PARTICIPANTS USING CONTINUED EVALUATIONS TO MEASURE EASE OF USE AND PATIENT SATISFACTION WITH THE AUDAIRE SMARTPHONE APPLICATION AT TWO WEEKS, THREE MONTHS, AND SIX MONTHS AFTER IMPLEMENTATION AND TO DESCRIBE CLOTTING FACTOR ASSAY MANAGEMENT UTILIZING THIS PLATFORM. 1295192 92777 CHAPTER SERVICES NHF'S CHAPTER SERVICES DEPARTMENT PROVIDES COMMUNITY SUPPORT BY HELPING ITS 53 MEMBER CHAPTERS OFFER EDUCATION, RESOURCES, AND REFERRALS TO AFFECTED MEMBERS OF THE INHERITABLE BLOOD DISORDERS COMMUNITY IN THE REGIONAL 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 COACH CHAPTER LEADERS ON HOW TO CREATE, EXECUTE AND EVALUATE PROGRAMS AND SERVICES DESIGNED FOR THEIR AFFECTED CONSTITUENTS. IN 2020 CHAPTER SERVICES HELD ONE NATIONAL LEADERSHIP SEMINAR OFFERING TRAINING THAT FOCUSED ON DIVERSIFICATION OF FUNDING STRATEGIES, BOARD DEVELOPMENT, BUILDING COMMUNITY OF VOLUNTEERS AND ADVOCATES, AND MORE. A FULL "CHAPTER TRAINING TRACK" WAS ALSO OFFERED DURING NHF'S 2020 VIRTUAL BLEEDING DISORDERS CONFERENCE. 1295192 92777 14006632 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 98 0 83 1 1 1 0 0 0 0 0 0 0 0 0 0 0 X 13 13 0 0 0 0 1 1 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK 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 PETER HARVEY 2123283700 7 PENNSYLVANIA PLAZA SUITE 1204 NEW YORK NY 10001 SCOTT MILLER CHAIR 10.00 X X 0 0 0 SCOTT MARTIN VICE-CHAIR 10.00 X X 0 0 0 JAMES A HEER TREASURER 10.00 X X 0 0 0 LYNNE CAPRETTO SECRETARY 10.00 X X 0 0 0 GARY D FARRO DIRECTOR, THRU 10/2/2020 10.00 X 0 0 0 BRIAN ANDREW DIRECTOR 10.00 X 0 0 0 MARK BORRELIZ DIRECTOR 10.00 X 0 0 0 JOHN FARIA DIRECTOR 10.00 X 0 0 0 RYAN GRIFFITH DIRECTOR 10.00 X 0 0 0 SUSAN HARTMANN DIRECTOR 10.00 X 0 0 0 CINDY KOMAR DIRECTOR 10.00 X 0 0 0 PATRICK MANCINI DIRECTOR 10.00 X 0 0 0 DERICK STACE-NAUGHTON DIRECTOR 10.00 X 0 0 0 ZIVA MANN DIRECTOR 10.00 X 0 0 0 LEONARD VALENTINO PRESIDENT & CHIEF EXECUTIVE OFFICER 40.00 X 270716 0 10633 SANDRA D ROTELLINI CHIEF OPERATING OFFICER 40.00 X 201791 0 41102 JORDANA ZEGER CHIEF FISCAL OFFICER 40.00 X 279322 0 36055 MICHELLE RICE CHIEF EXTERNAL AFFAIRS OFFICER 40.00 X 192215 0 54043 PETER HARVEY CHIEF BUSINESS OFFICER 40.00 X 80446 0 5356 MICHELLE WITKOP HEAD OF RESEARCH 40.00 X 178418 0 37770 BRETT SPITALE V.P. OF ADVANCEMENT 40.00 X 178209 0 55188 NEIL FRICK S.V.P. OF RESEARCH & MEDICAL INFORMATION 40.00 X 171272 0 36926 ANNA SPROVSKAYA CONTROLLER 40.00 X 160301 0 35243 TIMOTHY BRENT SENIOR DIRECTOR OF BUSINESS DEVELOPMENT 40.00 X 156587 0 45730 VAL BIAS FORMER CHIEF EXECUTIVE OFFICER 0.00 X 373362 0 38097 2242639 0 396143 21 1 1 0 IMPACT EDUCATION LLC 589 SKIPPACK PIKE SUITE 200 BLUE BELL PA 19422 CONSULTANT FOR MEDICAL EDUCATION 1054194 MANIFEST LLC 4110 N SCOTTSDALE ROAD SUITE 315 SCOTTSDALE AZ 85251 PRODUCTION/HEMAWARE PUBLICATION 510556 ARBORMETRIX INC 339 E LIBERTY STREET SUITE 210 ANN ARBOR MI 48104 PATIENT RESEARCH REGISTRY 285000 CCR SOLUTIONS INC 4351 35TH STREET ORLANDO FL 32811 VIRTUAL TECHNOLOGY SERVICES 215440 IMAGEX MEDIA INC 405-163 W HASTINGS ST VANCOUVER BC CA WEBSITE DEVELOPMENT SERVICES 164576 11 13861 1608045 599443 17588805 674 19810154 ADVERTISING 541800 1234783 1234783 EDUCATION SEMINARS 611710 9600 9600 1244383 730271 730271 8982424 8535978 446446 446446 446446 3560 1608045 775681 -772121 -772121 MISCELLANEOUS 611710 26071 26071 26071 21485204 9600 1234783 430667 X 2227802 2227802 122569 122569 20000 20000 1085875 639093 339092 107690 411459 241353 128439 41667 5603876 3485062 1865520 253294 409554 263095 131333 15126 1069124 680100 341426 47598 482865 303547 152388 26930 73952 18045 55907 44500 44500 198000 198000 35292 35292 3254641 2706532 532057 16052 29244 24815 4429 335254 207395 89458 38401 331822 235975 86009 9838 702242 450820 208986 42436 947622 864944 50483 32195 57530 40760 13117 3653 44223 31772 9469 2982 UNRELATED BUSINESS INCO 35203 33197 239 1767 STATIONERY AND PRINTING 705219 671102 4822 29295 MEMBERSHIP DUES 415954 196217 154454 65283 PROGRAM SUPPLIES 238275 212472 18175 7628 155588 131965 15937 7686 19037685 14006632 4281532 749521 2542770 3640103 7270612 9333019 2387220 1011638 479364 559535 524314 307639 164877 216675 19876536 23098209 818807 952465 33540186 38811644 2373878 1829414 928000 1126769 56179 91822 932479 2443162 4290536 5491167 X 21133500 24106324 8116150 9214153 29249650 33320477 33540186 38811644 2447519 1623308 0 X X 0 1 X 1 0 X 24169773 20991316 21279313 26168507 19810154 112419063 24169773 20991316 21279313 26168507 19810154 112419063 54773639 57645424 352739 517525 660487 775199 730271 3036221 173134 110340 119937 403411 41174 53754 78887 148386 26071 348272 116206967 0.49610 0.53080 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 1 24667 0 0 1 229595 1 62876 0 317138 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, THE MEDIA, 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 AT THE STATE & FEDERAL LEVELS. WASHINGTON DAYS IS NHF'S ANNUAL GRASSROOTS EVENT WHICH BROUGHT PATIENTS TO DC TO MEET WITH MEMBERS OF CONGRESS. 1795609 203554 15392 1983771 1601942 2426 205715 14474 1795609 1755256 4829 -144532 13611 1601942 1579434 7208 168614 1755256 322235 1235537 21662 1579434 0.75610 0.24390 0 0 51576 28377 23199 472738 279262 193476 216675 MUTUAL FUNDS-FIXED INCOME 9136198 F MUTUAL FUNDS-EQUITY-U.S. MUTUAL 8365632 F FUNDS-EQUITY-INTERNATIONAL 5595706 F COMMON AND PREFERRED STOCK US LARGE CAP EQUITY 673 F 23098209 DEFERRED RENT 368806 DEFERRED PENSION LIABILITY 676256 PAYCHECK PROTECTION PROGRAM LOAN 1398100 2443162 X 23848901 1623308 775681 2398989 21449912 35292 35292 21485204 19778074 775681 775681 19002393 35292 35292 19037685 PART V, LINE 4: TO PROVIDE FUNDING FOR RESEARCH FELLOWSHIP GRANTS. THE FOUNDATION HAS DECIDED TO APPROPRIATE FUNDS ON AN ANNUAL BASIS FOR EXPENDITURE AT THE RATE UP TO 4% OF THE FUND'S AVERAGE FAIR MARKET VALUE OVER THE MOST RECENT 36-MONTH PERIOD TAKING INTO CONSIDERATION RELEVANT ECONOMIC, INVESTMENT, AND FINANCIAL CONDITIONS. NET AMOUNTS AVAILABLE FOR RELEASE ACCUMULATED FROM PREVIOUS YEARS TOTAL $483,771 AND $295,609 AS OF DECEMBER 31, 2020 AND 2019, RESPECTIVELY, AND ARE RECORDED AS DONOR RESTRICTED NET ASSETS UNTIL DESIGNATED AS RESEARCH AWARDS. PART X, LINE 2: THE FOUNDATION RECOGNIZES THE EFFECT OF INCOME TAX POSITIONS ONLY IF THOSE POSITIONS ARE MORE LIKELY THAN NOT OF BEING SUSTAINED. MANAGEMENT HAS DETERMINED THAT THE FOUNDATION HAD NO UNCERTAIN TAX POSITIONS THAT WOULD REQUIRE FINANCIAL STATEMENT RECOGNITION OR DISCLOSURE. THE ORGANIZATION IS NO LONGER SUBJECT TO EXAMINATIONS BY THE APPLICABLE TAXING JURISDICTIONS FOR TAX YEARS PRIOR TO 2017. PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 775,681. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 775,681. 1 0 0 0 0 0 0 0 0 0 CENTRAL AMERICA SUPPORT ACTIVITIES FOR PATIENTS WITH BLEEDING DISORDERS 20000 CHECK 0 1 1 0 0 0 0 0 PART I, LINE 2: COMMITMENT TO WFH (WORLD FEDERATION OF HEMOPHILIA) TO PROVIDE FUNDING TO WFH'S COALITION OF AMERICAS PROGRAM. PART III ACCOUNTING METHOD: WALKS 1059029 1059029 32138 1002 503314 SPRING SOIREE 298684 298684 3805 140900 9 253892 250332 3560 374 1226 92922 1611605 1608045 3560 36317 2228 737136 775681 -772121 1 THE UNIVERSITY OF N CAROLINA AT CHAPEL HILL PO BOX 402420 ATLANTA GA 30384 566001393 501 ( C) ( 3) 304000 1 CLINICAL RESEARCH FELLOWSHIPS AND 1 JGP RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS BLEEDING DISORDERS ALLIANCE OF NDAKOTA PO BOX 548 FARGO ND 58107 471684681 501 ( C) ( 3) 10275 COVID-19 RELIEF GRANT & UNITE WALK GRANTS MARY M GOOLEY HEMOPHILIA CTR 1415 PORTLAND AVE STE 500 ROCHESTER NY 14621 160836536 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT THE MEDICAL COLLEGE OF WISCONSIN 8701 WATERTOWN PLANK ROAD MILWAUKEE WI 53226 390806261 501 ( C) ( 3) 210000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS UNIVERSITY OF TEXAS HEALTH CENTER AT SA 7703 FLOYD CURL DR SAN ANTONIO TX 78229 943425643 501 ( C) ( 3) 208000 2 JGP RESEARCH FELLOWSHIPS PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS UNIVERSITY OF MICHIGAN 3003 SOUTH STATE ROOM 1054 ANN ARBOR MI 48109 522414582 501 ( C) ( 3) 191000 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS ASOCIACION PUERTORRIQUENA DE HEMOFILIA PO BOX 29005 SAN JUAN PR 00929 660559280 501 ( C) ( 3) 15000 COVID-19 RELIEF GRANT & CHAPTER CAPACITY BUILDING GRANT HEMOPHILIA TREATMENT CENTER - ULP 2401 TERRA CROSSING BLVD SUITE 202 LOUISVILLE KY 40245 273645560 501 ( C) ( 3) 15000 NURSING FELLOWSHIP AWARDS TEXAS CENTRAL HEMOPHILIA ASSN 12700 HILLCREST ROAD STE 191 DALLAS TX 75230 751187148 501 ( C) ( 3) 14500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT HEMOPHILIA OF NORTH CAROLINA 260 TOWN HALL DRIVE STE A MORRISVILLE NC 27560 561273974 501 ( C) ( 3) 12500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT HEMOPHILIA FDN OF GREATER FLORIDA 1350 NORANGE AVE STE 227 WINTER PARK FL 32789 593418827 501 ( C) ( 3) 12500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT HEMOPHILIA COUNCIL OF CALIFORNIA 1507 21ST STREET STE 103 SACRAMENTO CA 95811 680182998 501 ( C) ( 3) 12000 STATE BASED ADVOCACY COALITION GRANT HEMOPHILIA OF IOWA 1570 SOUTH 1ST AVENUE J IOWA CITY IA 52240 421334948 501 ( C) ( 3) 11500 COVID-19 RELIEF GRANT & NHF DISASTER AND EMERGENCY RELIEF PROGRAM BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501 ( C) ( 3) 10500 JGP RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS UNIVERSITY OF COLORADO DENVER 13199 EAST MONTVIEW BLVD AURORA CO 80045 840404231 501 ( C) ( 3) 10500 JGP RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS LOUISIANA HEMOPHILIA FOUNDATION 3636 S SHERWOOD FOREST BLVD 390 BATON ROUGE LA 70816 510207472 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT THE HEMOPHILIA CENTER OF WESTERN PENNSYLVANIA 20411 RT 19 UNIT 14 CRANBERRY TOWNSHIP PA 16066 251359331 501 ( C) ( 3) 10000 SOCIAL WORKER FELLOWSHIP OKLAHOMA HEMOPHILIA FOUNDATION 8283 N OWASSO EXPY SUITE H OWASSO OK 74055 730745621 501 ( C) ( 3) 14500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT BLEEDING DISORDERS ASSN OF NE NEW YORK 333 BROADWAY STE 320 TROY NY 12180 222519156 501 ( C) ( 3) 9500 COVID-19 RELIEF GRANT & UNITE WALK GRANTS HEMOPHILIA ASSOC OF SAN DIEGO COUNTY 3550 CAMINO DEL RIO NORTH SUITE 105 105 SAN DIEGO CA 92108 237252243 501 ( C) ( 3) 9500 COVID-19 RELIEF GRANT & UNITE WALK GRANTS HEMOPHILIA FOUNDATION OF SCALIFORNIA 959 E WALNUT STREET 114 PASADENA CA 91106 951916053 501 ( C) ( 3) 9500 COVID-19 RELIEF GRANT & UNITE WALK GRANTS KENTUCKY HEMOPHILIA FOUNDATION 1850 TAYLOR AVENUE SUITE 2 LOUISVILLE KY 40213 610656750 501 ( C) ( 3) 9500 COVID-19 RELIEF GRANT & UNITE WALK GRANTS LONE STAR CHAPTER OF NHF 5600 NORTHWEST CENTRAL DR STE140 HOUSTON TX 77092 760661966 501 ( C) ( 3) 9500 COVID-19 RELIEF GRANT & UNITE WALK GRANTS MIDWEST HEMOPHILIA ASSOCIATION 1471 W SOUTH STREET SUITE F OZARK MO 65721 431595395 501 ( C) ( 3) 9500 COVID-19 RELIEF GRANT & UNITE WALK GRANTS NORTHWEST OHIO HEMOPHILIA FDN 2121 HUGHES DRIVE HARRIS MACINTOSH TOWER SUITE 940 TOLEDO OH 43606 340965673 501 ( C) ( 3) 9500 COVID-19 RELIEF GRANT & UNITE WALK GRANTS ROCKY MTN HEMOPHILIA & BLEEDING DISORDERS 1627 W MAIN ST 142 BOZEMAN MT 59715 810533720 501 ( C) ( 3) 9500 COVID-19 RELIEF GRANT & UNITE WALK GRANTS SANGRE DE ORO INC 4600 LINCOLN RD NE SUITE 22 ALBERQUERQUE NM 87109 850378433 501 ( C) ( 3) 9500 COVID-19 RELIEF GRANT & UNITE WALK GRANTS WESTERN PA CHAPTER OF NHF 20411 ROUTE 19 UNIT 14 CRANBERRY TOWNSHIP PA 16066 251359331 501 ( C) ( 3) 9500 COVID-19 RELIEF GRANT & UNITE WALK GRANTS BLEEDING DISORDER FDN OF WASHINGTON 9639 FIRDALE AVE STE A EDMONDS WA 98020 916068857 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT HEMOPHILIA ASSOCIATION OF NEW JERSEY 197 ROUTE 18 SOUTH SUITE 206 EAST BRUNSWICK NJ 08816 221964188 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT HEMOPHILIA ASSOCIATION OF NEW YORK INC 131 WEST 33RD STREET SUITE11D NEW YORK NY 10001 135650955 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT AMERICAN THROMBOSIS HEMOSTATIS NETWORK 67 RED ROCK CIRCLE ROCHESTER NY 14626 205244339 501 ( C) ( 3) 249700 NHF INVESTIGATOR INITIATED RESEARCH IN DEVELOPING OF POINT-OF-CARE TESTING FOR HEMOPHILIA AND MLOF RNA EXTRACTION OF GENOTYPING SAMPLES, STORAGE, PROCESSING AND MAINTENANCE OF THESE SAMPLES SNAKE RIVER HEMOPHILIA AND BDA INC 520 CHURCH STREET PO BOX 245 NEWDALE ID 83436 201822216 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT SOUTHWEST OHIO HEMOPHILIA FOUNDATION 3131 SOUTH DIXIE DRIVE SUITE 103 MORAINE OH 45439 311527065 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT UNITED HEMOPHILIA FOUNDATION 12138 CENTRAL AVENUE SUITE 872 MITCHELLVILLE MD 20721 813826935 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT NEW YORK CITY HEMOPHILIA CHAPTER 315 WEST 36TH STREET 2ND FLOOR NEW YORK NY 10018 261915425 501 ( C) ( 3) 13250 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT UTAH HEMOPHILIA FOUNDATION 772 EAST 3300 SOUTH SUITE 210 SALT LAKE CITY UT 84106 876127162 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT INDIANA HEMOPHILIA & THROMBOSIS CENTER 8326 NAAB RD INDIANAPOLIS IN 46260 352047838 501 ( C) ( 3) 100000 GRANT TO ENHANCE BLEEDING DISORDERS EDUCATION REGENTS OF THE UNIVERSITY OF CALIFORNIA 1156 HIGH ST SANTA CRUZ CA 95064 941539563 501 ( C) ( 3) 60000 NHF INNOVATIVE INVESTIGATOR RESEARCH AWARD VIRGINIA HEMOPHILIA FOUNDATION 410 N RIDGE ROAD SUITE 215 RICHMOND VA 23229 541183181 501 ( C) ( 3) 24500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT HEMOPHILIA OF SOUTH CAROLINA 439 CONGAREE ROAD SUITE BOX 5 GREENVILLE SC 29607 237400632 501 ( C) ( 3) 22500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT HEMOPHILIA FOUNDATION OF MICHIGAN 1921 W MICHIGAN AVE YPSILANTI MI 48197 381905673 501 ( C) ( 3) 20000 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT ALASKA HEMOPHILIA ASSOCIATION 1601 W NRTHRN LTS BLVD ANCHORAGE AK 99517 943143226 501 ( C) ( 3) 19500 COVID-19 RELIEF GRANT & NHF DISASTER AND EMERGENCY RELIEF GRANT TRI-STATE BLEEDING DISORDER FDN 635 W 7TH ST CINCINNATI OH 45203 310928221 501 ( C) ( 3) 19500 COVID-19 RELIEF GRANT & NHF DISASTER AND EMERGENCY RELIEF GRANT BLEEDING DISORDERS ALLIANCE ILLINOIS 210 SOUTH DESPLAINES CHICAGO IL 60661 362390156 501 ( C) ( 3) 17000 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT PACIFIC NORTHWEST BLEEDING DISORDERS 456 SW MONROE AVE CORVALLIS OR 97333 480780314 501 ( C) ( 3) 16500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT NEW ENGLAND HEMOPHILIA ASSOCIATION 347 WASHINGTON STREETSTE402 DEDHAM MA 02026 046111861 501 ( C) ( 3) 16000 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT GREAT LAKES HEMOPHILIA FOUNDATION 638 N 18TH ST STE 108 MILWAUKEE WI 53233 237367636 501 ( C) ( 3) 15500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT RADY CHILDREN'S HOSPITAL - SAN DIEGO 3020 CHILDRENS WAY SAN DIEGO CA 92123 951691313 501 ( C) ( 3) 15000 PHYSICAL THERAPIST FELLOWSHIP OHSU DOERNBECHER CHILDREN'S HOSPITAL 1121 SOUTHWEST SALMON SUITE 100 PORTLAND OR 97205 930579589 501 ( C) ( 3) 10000 PHYSICAL THERAPIST FELLOWSHIP EASTERN PENNSYLVANIA CHAPTER OF NHF 1489 BALTIMORE PIKE STE 227 SPRINGFIELD PA 19064 231567876 501 ( C) ( 3) 12500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT EMORY UNIVERSITY PO BOX 935084 ATLANTA GA 31193 580566256 501 ( C) ( 3) 213152 CLINICAL RESEARCH FELLOWSHIP PROMOTING INNOVATION IN BLEEDING AND CLOTTING DISORDERS CENTRAL CALIFORNIA HEMOPHILIA FDN PO BOX 163689 SACRAMENTO CA 95816 680182998 501 ( C) ( 3) 9500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT FLORIDA HEMOPHILIA ASSOCIATION 915 MIDDLE RIVER DR STE 421 FORT LAUDERDALE FL 33304 592072352 501 ( C) ( 3) 9500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT GATEWAY HEMOPHILIA ASSOCIATION 4976 EICHELBERGER SAINT LOUIS MO 63109 431447057 501 ( C) ( 3) 9500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT HEMOPHILIA ALLIANCE OF MAINE PO BOX 794 AUGUSTA ME 04332 275057729 501 ( C) ( 3) 9500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT HEMOPHILIA ASSOC OF SAN DIEGO COUNTY 3550 CAMINO DEL RIO NORTH SUITE 105 105 SAN DIEGO CA 92108 237252243 501 ( C) ( 3) 9500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT HEMOPHILIA OF INDIANA 6910 N SHADELAND AVE STE 140 INDIANAPOLIS IN 46220 351278222 501 ( C) ( 3) 9500 STATE BASED ADVOCACY COALITION GRANT & COVID-19 RELIEF GRANT ARIZONA HEMOPHILIA ASSOCIATION 826 N 5TH AVENUE PHOENIX AZ 85003 860209257 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT CONNECTICUT HEMOPHILIA SOCIETY PO BOX 548 WINDSOR CT 06095 271752178 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT HCWNY FOUNDATION INC 1010 MAIN S BUFFALO NY 14202 464703683 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT HEMOPHILIA ASSN OF THE CAPITAL AREA 8136 OLD KEENE MILL ROAD SUITE A312 A312 SPRINGFIELD VA 22152 541702561 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT HEMOPHILIA FOUNDATION OF MARYLAND 13 CLASS COURT PARKVILLE MD 21234 521973777 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT HEMOPHILIA FOUNDATION OF MNDAKOTAS 750 S PLAZA DR 207 MENDOTA HEIGHTS MN 55120 416032276 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT TENNESSEE HEMOPHILIA & BLEEDING DISORDERS 1819 WARD DRIVE SUITE 102 MURFREESBORO TN 37129 621662856 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT SISTERS AND CAREGIVERS BLEEDING DISORDERS 5626 FEATHERCREEK RD MATTESON IL 60443 472777844 501 ( C) ( 3) 7500 COVID-19 RELIEF GRANT 66 CHAPTERS EMERGENCY FINANCIAL ASSISTANCE TO FAMILIES WITH BLEEDING DISORDERS 167 118719 SCHOLARSHIP AWARDS 2 3850 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 NHF. ONLY AFTER SUBMISSION OF A QUARTERLY PROGRAM REPORT DESCRIBING THEIR PROGRESS IN COMPLETING DELINEATED TASKS AND COMPLETE FINANCIAL 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 X 1 0 0 0 0 0 0 1 0 VAL BIAS FORMER CHIEF EXECUTIVE OFFICER 0 0 0 0 373362 0 0 0 38097 0 411459 0 0 0 JORDANA ZEGER CHIEF FISCAL OFFICER 275622 0 500 0 3200 0 23428 0 12627 0 315377 0 0 0 LEONARD VALENTINO PRESIDENT & CHIEF EXECUTIVE OFFICER 268370 0 0 0 2346 0 0 0 10633 0 281349 0 0 0 MICHELLE RICE CHIEF EXTERNAL AFFAIRS OFFICER 190249 0 1000 0 966 0 27531 0 26512 0 246258 0 0 0 SANDRA D ROTELLINI CHIEF OPERATING OFFICER 198985 0 1000 0 1806 0 28262 0 12840 0 242893 0 0 0 BRETT SPITALE V.P. OF ADVANCEMENT 176579 0 1000 0 630 0 18713 0 36475 0 233397 0 0 0 MICHELLE WITKOP HEAD OF RESEARCH 176230 0 1000 0 1188 0 11977 0 25793 0 216188 0 0 0 NEIL FRICK S.V.P. OF RESEARCH & MEDICAL INFORMA 169306 0 1000 0 966 0 24086 0 12840 0 208198 0 0 0 TIMOTHY BRENT SENIOR DIRECTOR OF BUSINESS DEVELOPM 153173 0 3000 0 414 0 9255 0 36475 0 202317 0 0 0 ANNA SPROVSKAYA CONTROLLER 155137 0 1000 0 4164 0 22402 0 12841 0 195544 0 0 0 PART I, LINE 3 THE BOARD OF DIRECTORS SETS THE COMPENSATION OF THE CEO AT HIRE AND THEREAFTER USES AN INDEPENDENT CONSULTANT'S ANALYSIS OF COMPARABLE SALARY SURVEYS (BIENNIAL). PART I, LINE 4A VAL BIAS RECEIVED A SEVERANCE PACKAGE OF $411,459 DURING 2020. PART I, LINE 7 THE CEO SHALL BE ELIGIBLE TO RECEIVE AN ANNUAL BONUS OF UP TO 10% 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 OF DIRECTORS. 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 ORGANIZATION MUST MEET CERTAIN STANDARDS IN ORDER TO BE APPROVED AS A CHAPTER. 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 11B 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, CBO, COO AND CONTROLLER ARE ALSO PRESENT ON THE CALL. FORM 990, PART VI, SECTION B, LINE 12C ALL EMPLOYEES, OFFICERS AND DIRECTORS MUST COMPLETE A CONFLICT OF INTEREST FORM STATING THAT THEY HAVE NO CONFLICT OF INTEREST OR IF THEY DO, THEY MUST DISCLOSE SUCH CONFLICT ON THIS FORM. THIS FORM MUST BE COMPLETED AT THE TIME OF HIRE AND EVERY YEAR THEREAFTER. FOR MATTERS CONCERNING CONFLICTS OF INTEREST BY A VOTING MEMBER OF THE BOARD, THE MEMBER WILL BE PROHIBITED FROM PARTICIPATING IN DELIBERATIONS AND DECISIONS CONCERNING ITEMS THAT GIVE RISE TO SUCH CONFLICTS. IN THE EVENT A CONFLICT OF INTEREST IS DISCLOSED, THE MATTER WILL BE REVIEWED BY THE CEO, CBO AND COO. THE CEO, CBO AND COO MAY DECIDE TO PERMIT EXCEPTIONS TO THIS POLICY IF IT IS DETERMINED, IN GOOD FAITH, THAT SUCH PROPOSED CONTRACT OR TRANSACTION IS ON TERMS WHICH ARE MATERIALLY ADVANTAGEOUS TO NHF OR THE EMPLOYEE INVOLVED WILL PROVIDE A UNIQUE SERVICE TO NHF ON TERMS WHICH ARE FAIR AND REASONABLE TO NHF. 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 IN ALIGNMENT WITH A STRUCTURE THAT INCORPORATES A COMPREHENSIVE SALARY ANALYSIS PROVIDED BY A COMPENSATION CONSULTING COMPANY AS WELL AS INPUT FROM COO/HR. THIS WAS LAST UNDERTAKEN IN 2020. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS FORM 990, FINANCIAL STATEMENTS, ARTICLES OF INCORPORATION, CONFLICTS OF INTEREST, FORM 1023, AND BY-LAWS AVAILABLE ON THE ORGANIZATION'S WEBSITE AT WWW.HEMOPHILIA.ORG OR UPON WRITTEN REQUEST OR BY CALLING THE ORGANIZATION DIRECTLY. FORM 990, PART IX, LINE 11G EMPLOYMENT RECRUITING: PROGRAM SERVICE EXPENSES 891. MANAGEMENT AND GENERAL EXPENSES 8,040. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 8,931. CONSULTING: PROGRAM SERVICE EXPENSES 1,500,446. MANAGEMENT AND GENERAL EXPENSES 303,132. FUNDRAISING EXPENSES 10,316. TOTAL EXPENSES 1,813,894. TEMPORARY HELP: PROGRAM SERVICE EXPENSES 166. MANAGEMENT AND GENERAL EXPENSES 30. FUNDRAISING EXPENSES 5. TOTAL EXPENSES 201. OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 1,194,142. MANAGEMENT AND GENERAL EXPENSES 213,126. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 1,407,268. PAYROLL PROCESSING FEES: PROGRAM SERVICE EXPENSES 10,887. MANAGEMENT AND GENERAL EXPENSES 7,729. FUNDRAISING EXPENSES 5,731. TOTAL EXPENSES 24,347. FORM 990, PART XII, LINE 2C: THE ORGANIZATION HAS A COMMITTEE THAT ASSUMES RESPONSIBILITY FOR OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS. FOR FISCAL YEAR 2020, THE ORGANIZATION CHANGED ITS SELECTION OF AN INDEPENDENT ACCOUNTANT.