NATIONAL BLEEDING DISORDERS FOUNDATION: Form 990, tax year 2024
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL BLEEDING DISORDERS FOUNDATION (EIN 13-5641857)
- Tax period
- 2024-01-01 to 2024-12-31
- Filed
- 2025-10-06
- IRS object ID
- 202502799349301245
- Schema version
- 2024v5.2
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule C
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule J
- Schedule O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2025-10-06T13:03:54-05:00 | ReturnTs |
| Tax Period End | 2024-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 331374517 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | PKF O'CONNOR DAVIES ADVISORY LLC | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 20 COMMERCE DRIVE SUITE 301 | AddressLine1Txt |
| City | CRANFORD | CityNm |
| State Abbreviation | NJ | StateAbbreviationCd |
| ZIP | 070163618 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2024-01-01 | TaxPeriodBeginDt |
Filer Filer
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 135641857 | EIN |
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | NATIONAL BLEEDING DISORDERS FOUNDATION | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | NATI | BusinessNameControlTxt |
| Phone | 2123283700 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1230 AVENUE OF THE AMERICAS 16TH F | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10020 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | PETER HARVEY | PersonNm |
| Person Title | CHIEF BUSINESS OFFICER | PersonTitleTxt |
| Phone | 2123283700 | PhoneNum |
| Signature | 2025-10-01 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IRS Responsible Prty Info Curr | Yes (1) | IRSResponsiblePrtyInfoCurrInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | GARRETT M HIGGINS | PreparerPersonNm |
| PTIN | P00543209 | PTIN |
| Phone | 9082726200 | PhoneNum |
| Preparation | 2025-10-06 | PreparationDt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2024 | TaxYr |
| Build TS | 2025-03-06 01:10:19Z | BuildTS |
Form 990 IRS990
| Field | Value | IRS element (for citing) |
|---|---|---|
| Principal Officer | PETER HARVEY | PrincipalOfficerNm |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1230 AVENUE OF THE AMERICAS 16TH FL | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10020 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $18,860,927 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.BLEEDING.ORG | WebsiteAddressTxt |
| Type Of Organization Corp | Yes (X) | TypeOfOrganizationCorpInd |
| Formation | 1948 | FormationYr |
| Legal Domicile State | NY | LegalDomicileStateCd |
| Activity Or Mission | THE NATIONAL BLEEDING DISORDERS FOUNDATION (FORMERLY THE NATIONAL HEMOPHILIA FOUNDATION) IS DEDICATED TO FINDING CURES FOR INHERITABLE BLOOD AND BLEEDING DISORDERS AND TO ADDRESSING AND PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH RESEARCH, EDUCATION, AND ADVOCACY ENABLING PEOPLE AND FAMILIES TO THRIVE. | ActivityOrMissionDesc |
| Voting Members Governing Body | 13 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 13 | VotingMembersIndependentCnt |
| Total Employee | 99 | TotalEmployeeCnt |
| Total Volunteers | 1078 | TotalVolunteersCnt |
| Total Gross UBI | $883,237 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $45,467 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $16,322,358 | PYContributionsGrantsAmt |
| CY Contributions Grants | $13,694,516 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $1,337,404 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $1,207,808 | CYProgramServiceRevenueAmt |
| PY Investment Income | $1,005,490 | PYInvestmentIncomeAmt |
| CY Investment Income | $1,743,292 | CYInvestmentIncomeAmt |
| PY Other Revenue | $382,596 | PYOtherRevenueAmt |
| CY Other Revenue | -$75,479 | CYOtherRevenueAmt |
| PY Total Revenue | $19,047,848 | PYTotalRevenueAmt |
| CY Total Revenue | $16,570,137 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $777,540 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $1,138,320 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $11,576,381 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $11,237,387 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $1,357,159 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $10,726,427 | PYOtherExpensesAmt |
| CY Other Expenses | $7,270,942 | CYOtherExpensesAmt |
| PY Total Expenses | $23,080,348 | PYTotalExpensesAmt |
| CY Total Expenses | $19,646,649 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$4,032,500 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$3,076,512 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $33,488,551 | TotalAssetsBOYAmt |
| Total Assets EOY | $30,813,469 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $3,788,578 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $3,449,324 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $29,699,973 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $27,364,145 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | THE NATIONAL BLEEDING DISORDERS FOUNDATION (FORMERLY THE NATIONAL HEMOPHILIA FOUNDATION) IS DEDICATED TO FINDING CURES FOR INHERITABLE BLOOD AND BLEEDING DISORDERS AND TO ADDRESSING AND PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH RESEARCH, EDUCATION, AND ADVOCACY ENABLING PEOPLE AND FAMILIES TO THRIVE. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $5,500,113 | ExpenseAmt |
| Grant | $182,269 | GrantAmt |
| Revenue | $324,571 | RevenueAmt |
| Desc | HEALTH EDUCATION AND TRAININGNBDF EXPANDED ITS HEALTH COACHING PROJECT, OWN YOUR PATH, FOR MEN AND WOMEN WITH HEMOPHILIA OR VON WILLEBRAND DISEASE (VWD). THE PROGRAM AIMS TO IMPROVE TREATMENT ADHERENCE. NBDF ALSO CONTINUES TO DISTRIBUTE ALL OF ITS EDUCATIONAL PUBLICATIONS FOR THOSE LIVING WITH INHERITABLE BLEEDING DISORDERS, FROM MASAC FOR YOU NEW PUBLICATIONS ON DIAGNOSIS, TREATMENT AND CARE FOR WOMEN AND GIRLS, TO NBDF'S NEW THRIVE CAMPAIGN SHOWCASING 6 EASY STEPS TO LIVING HEALTHY WITH A BLEEDING DISORDER. IN 2024, NBDF DISTRIBUTED 30,777 PUBLICATIONS.THE PRIMARY GOALS OF THE NATIONAL BLEEDING DISORDERS FOUNDATION'S (NBDF'S) VICTORY FOR WOMEN AND BETTER YOU KNOW PROGRAMS ARE: 1) IMPROVE THE AWARENESS OF SYMPTOMS OF BLEEDING DISORDERS IN WOMEN TO INCREASE DIAGNOSIS LONG TERM; AND 2) TO PROVIDE AFFECTED WOMEN WITH EDUCATION AND SUPPORT. IN 2024 NBDF REACHED OUT TO 26 COMMUNITY PARTNERS TO SHARE ABOUT SIGNS AND SYMPTOMS OF BLEEDING DISORDERS. IN ADDITION, CLOSE TO 2,000 WOMEN TOOK THE BETTER YOU KNOW RISK ASSESSMENT TOOL, 76% HAD SYMPTOMS OF A BLEEDING DISORDER, AND OVER 7,600 VISITED VICTORYFORWOMEN.ORG.STEPS FOR LIVING (SFL) IS A MULTIMEDIA EDUCATIONAL PROGRAM DESIGNED TO INCREASE ACCESS TO AGE AND CULTURALLY APPROPRIATE INFORMATION THAT CAN HELP IN THE MANAGEMENT OF DAILY CHALLENGES OF LIVING WITH A BLEEDING DISORDER. NBDF LAUNCHED THE REDESIGNED AND REWRITTEN SFL WEBSITE IN ENGLISH AND SPANISH IN JULY 2024 LEADING TO OVER 60,000 VIEWS IN 2024.NBDF'S EDUCATION FOR EMPOWERMENT PROGRAM BRINGS WORKSHOPS OUT TO LOCAL CHAPTER AND HTC EVENTS. NBDF FACILITATED 89 WORKSHOPS IN ENGLISH AND SPANISH, WITH OVER 1200 PARTICIPANTS IN 2024. OF THIS PROGRAM, 86% LEARNED SOMETHING NEW FROM THE SESSIONS, AND 84% PLANNED TO IMPLEMENT THE NEW LEARNINGS OR SKILLS.NBDF HAS DESIGNED THE NATIONAL YOUTH LEADERSHIP INSTITUTE (NYLI) TO ASSIST YOUNG PEOPLE FROM THE BLEEDING DISORDERS COMMUNITY TO BECOME WELL-TRAINED, RECOGNIZED LEADERS. NBDF PROVIDES YOUNG ADULTS WITH TRAINING, SUPPORT AND OPPORTUNITIES TO PROVIDE EDUCATION TO THE BLEEDING DISORDERS COMMUNITY. IN 2024, NBDF PROVIDED TRAININGS TO THE 7 MEMBERS OF NYLI ON TOPICS INCLUDING PUBLIC SPEAKING, ADVOCACY, NON-PROFIT MANAGEMENT AND FUNDRAISING. NBDF DEVELOPED NUMEROUS EDUCATIONAL COMPONENTS TO ITS 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. IN 2024 NBDF EXPANDED ITS 3D VIDEO SERIES ON THE CLOTTING CASCADE WITH NEW VIDEOS ON FACTOR REPLACEMENT THERAPY AND BISPECIFIC ANTIBODY THERAPY, BOTH IN ENGLISH AND SPANISH. THERE ARE OVER 100,000 VIEWS ACROSS ALL THE SERIES VIDEOS COMBINED SINCE THEY LAUNCHED.AT NBDF'S 76TH BLEEDING DISORDERS CONFERENCE (BDC), HELD SEPTEMBER 12-14, 2024, AT THE WORLD CONGRESS CONVENTION CENTER IN ATLANTA, GEORGIA NBDF DELIVERED 64 CONSUMER TRACK EDUCATIONAL SESSIONS, AS WELL AS 4 NETWORKING HOURS FOR CONNECTIONS AND SUPPORT. OF THOSE WHO ATTENDED, 87% REPORTED LEARNING SOMETHING NEW AND 84% SAID THEY WOULD IMPLEMENT THOSE NEW LEARNINGS OR SKILLS. NBDF ALSO OFFERED 55 HOURS OF LIVE IN-PERSON TRAINING FOR HEALTH CARE PROVIDERS IN FOUR CONCURRENT EDUCATIONAL TRACKS. CONTINUING EDUCATION CREDITS WERE MADE AVAILABLE TO EIGHT DISTINCT LICENSED HEALTHCARE DISCIPLINES AS FOLLOWS: - PHYSICIANS/OTHER PRESCRIBERS MD/DO PHYSICIANS; PHYSICIAN ASSISTANTS; NURSE PRACTITIONERS - (A MAXIMUM OF 8.75 AMA PRA CATEGORY 1 CREDITS) - PHARMACISTS - (FOR 8.75 CONTACT HOURS (0.875 CEUS) OF THE ACCREDITATION COUNCIL FOR PHARMACY EDUCATION (ACPE) - REGISTERED NURSES AND NURSE PRACTITIONERS (A MAXIMUM OF 12.5 ANCC ACCREDITED NURSING CONTINUING PROFESSIONAL DEVELOPMENT CONTACT HOURS ) - MEDICAL AND CLINICAL SOCIAL WORKERS [12.50 CLINICAL/ETHICS ASWB-ACE APPROVED CONTINUING EDUCATION CREDITS (UP TO 11.0 CLINICAL AND 1.5 ETHICS)] - PHYSICAL THERAPISTS AND PHYSICAL THERAPY ASSISTANTS (UP TO 12.5 PT CEUS, STATE DEPENDENT)1,810 INDIVIDUALS ATTENDED OUR 2024 BLEEDING DISORDERS CONFERENCE OVERALL, WHICH INCLUDES A TOTAL OF 326 HEALTH CARE PROVIDERS (OF WHICH, 245 PROVIDERS WERE ISSUED CME/CE CERTIFICATES FOR THEIR SUCCESSFUL PARTICIPATION). HANDI, NBDF'S INFORMATION RESOURCE CENTER (RENAMED TO THE NEIL FRICK RESOURCE CENTER IN THE BEGINNING OF 2025), PROVIDED CUSTOMIZED RESPONSES TO 1,082 PHONE OR E-MAIL INFORMATION REQUESTS ABOUT BLEEDING OR OTHER RARE DISORDERS IN 2024. HANDI WROTE 54 MEDICAL NEWS STORIES AND JOURNAL ARTICLE SUMMARIES THAT WERE POSTED ON THE NBDF WEBSITE. HANDI HIGHLIGHTS, A NEW INFORMATIONAL FLYER PROVIDING DIGITAL LINKS TO INTERNAL AND EXTERNAL RESOURCES IN KEY AREAS FOR PARENTS/CAREGIVERS, INDIVIDUALS LIVING WITH AN INHERITABLE BLEEDING DISORDER AND HEALTHCARE PROVIDERS WAS MADE AVAILABLE ON NBDF'S WEBSITE. A TOTAL OF NINE "HANDI HIGHLIGHTS" WERE POSTED IN 2024 IN THE SUBJECT AREAS OF: INTRODUCTORY EDUCATION RESOURCES, PAIN MANAGEMENT, NOVEL TECHNOLOGIES AND ADVANCES IN TREATMENT, CAREGIVING, MENTAL HEALTH, BACK TO SCHOOL, JOINT HEALTH, STUDENTS OFF TO COLLEGE, WOMEN AND GIRLS LIVING WITH BLEEDING DISORDERS. HANDI ALSO AWARDED THE 2024 KEVIN CHILD SCHOLARSHIP TO A QUALIFIED STUDENT FROM BIGFORK, MONTANA. NBDF'S MEDICAL AND SCIENTIFIC ADVISORY COUNCIL (MASAC) ISSUED NINE (NEW OR UPDATED) DOCUMENTS IN 2024:MASAC DOCUMENT 291 - PHYSICAL THERAPY MANAGEMENT FOR BONE HEALTH IN PEOPLE WITH BLEEDING DISORDERSMASAC DOCUMENT 290 - MASAC RECOMMENDATIONS CONCERNING PRODUCTS LICENSED FOR THE TREATMENT OF HEMOPHILIA AND SELECTED DISORDERS OF THE COAGULATION SYSTEM MASAC DOCUMENT 289 - RECOMMENDATIONS ON INCREASING ACCESS TO MENTAL HEALTH AND SUBSTANCE USE DISORDER TREATMENT FACILITIES AND PROGRAMS FOR PERSONS WITH BLEEDING DISORDERS MASAC DOCUMENT 288 - MASAC RESOLUTION ON PROPOSED HEMOPHILIA TREATMENT GUIDELINES FROM THE INTERNATIONAL SOCIETY ON THROMBOSIS AND HAEMOSTASIS (ISTH) MASAC DOCUMENT 287 - RESOLUTION ON THE WORLD HEALTH ORGANIZATION ESSENTIAL MEDICINE LIST MASAC DOCUMENT 286 - MASAC RECOMMENDATIONS REGARDING DIAGNOSIS AND MANAGEMENT OF INHERITED BLEEDING DISORDERS IN GIRLS AND WOMEN WITH PERSONAL AND FAMILY HISTORY OF BLEEDING MASAC DOCUMENT 285 - MASAC RECOMMENDATION REGARDING THE NEED FOR BLEEDING DISORDERS GENE THERAPY LEXICON DEVELOPMENTMASAC DOCUMENT 284 - MASAC RECOMMENDATIONS CONCERNING PRODUCTS LICENSED FOR THE TREATMENT OF HEMOPHILIA AND SELECTED DISORDERS OF THE COAGULATION SYSTEM MASAC DOCUMENT 283 - PHYSICAL THERAPY MANAGEMENT FOR PEOPLE WITH BLEEDING DISORDERS AND CHRONIC PAIN | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $4,191,067 | ExpenseAmt |
| Grant | $284,173 | GrantAmt |
| Revenue | $0 | RevenueAmt |
| Desc | COMMUNITY SERVICES NBDF'S PUBLIC POLICY DEPARTMENT WORKS TO ADVOCATE FOR POLICIES THAT PROMOTE 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 HEALTH EDUCATION AND TRAINING 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, NBDF 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 NBDF 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. THIS PROGRAM IS NAMED THE STATE BASED ADVOCACY COALITION (SBAC) PROGRAM. GRANTS ARE ISSUED ON AN ANNUAL BASIS, WITH CHAPTERS APPLYING EACH DECEMBER. ALL CHAPTERS ARE ELIGIBLE TO APPLY FOR FINANCIAL AND PROGRAMMATIC SUPPORT.MEMBERS OF THE INHERITABLE BLOOD DISORDERS COMMUNITY THROUGHOUT THE COUNTRY ARE ENCOURAGED TO PARTICIPATE IN NBDF'S ANNUAL WASHINGTON DAYS PROGRAM, WHICH IS A GRASSROOTS ADVOCACY EVENT THAT BRINGS PATIENTS AND THEIR FAMILIES TO WASHINGTON, DC TO MEET WITH THEIR MEMBERS OF CONGRESS AND EDUCATE THEM ABOUT THE DISORDERS IMPACTING THE COMMUNITY. THIS EVENT TOOK PLACE IN EARLY MARCH. CONSUMERS ARE ALSO ENCOURAGED TO ATTEND STATE ADVOCACY DAYS AT THEIR LOCAL STATE CAPITAL. NBDF 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. NBDF HOSTS ABOUT 25-30 STATE ADVOCACY DAYS PER YEAR. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $3,320,289 | ExpenseAmt |
| Grant | $593,161 | GrantAmt |
| Revenue | $0 | RevenueAmt |
| Desc | RESEARCHNATIONAL RESEARCH BLUEPRINT (NRB): A COMMUNITYWIDE PROJECT TO REDEFINE THE WAY RESEARCH IN THE BLEEDING DISORDERS COMMUNITY WAS LAUNCHED IN 2019. THE GOALS OF THE NATIONAL RESEARCH BLUEPRINT (NRB) ARE: (1) DEVELOP A MULTIDISCIPLINARY INTEGRATED RESEARCH ENTERPRISE CENTERED IN A NETWORK OF BOTH SPECIALTY AND COMMUNITY-BASED CARE; DRIVEN BY PATIENTS WITH INHERITED BLEEDING DISORDERS (PWIBD) AS LIVED EXPERIENCE EXPERTS (LEES); EMBEDDED IN THE PRINCIPLES OF SOCIAL JUSTICE; TO STEADILY ADVANCE THE STANDARD OF CARE FOR PWIBDS THROUGH IMPACTFUL BASIC, TRANSLATIONAL, CLINICAL, HEALTH OUTCOMES, AND IMPLEMENTATION RESEARCH, ADVOCACY AND EDUCATION; (2) EXPAND THE NATIONAL RESEARCH INFRASTRUCTURE TO SUPPORT THE ENVISIONED RESEARCH ENTERPRISE THROUGH FACILITATION COLLABORATION AND INCLUSION, AND (3) REINVIGORATE A SUSTAINABLE WORKFORCE ACROSS COMPREHENSIVE CARE AND SCIENTIFIC DISCIPLINES THAT INCORPORATES THE LEE PERSPECTIVE TO ADVANCE HEALTH THROUGH THE SEAMLESS INTEGRATION OF CARE AND RESEARCH AS WELL AS ACTIVE COMMUNITY ENGAGEMENT TO FOSTER A RESEARCH CULTURE. IN 2024, NBDF CONVENED KEY STAKEHOLDERS IN A NRB SUMMIT TO PRESENT THE FRAMEWORK AS DEFINED BY ALL WORKING GROUPS. AS A RESULT, FIVE MANUSCRIPTS DESCRIBING THE PROCESS ARE IN PROGRESS, WITH AN ESTIMATED SUBMISSION DATE DURING THE SUMMER OF 2025. THE RESEARCH TEAM PRESENTED IN NUMEROUS SPEAKING ENGAGEMENTS NATIONALLY TO CREATE AWARENESS AND ESTABLISH PARTNERSHIPS. COMMUNITY VOICES IN RESEARCH (CVR): CVR IS A COMMUNITY-POWERED REGISTRY INTENDED TO CAPTURE THE EXPERIENCE OF LIVING WITH A BLEEDING DISORDER DIRECTLY FROM THOSE AFFECTED AND THEIR IMMEDIATE RELATIVES. IT PROVIDES AN INTIMATE LOOK OF THE LIVED EXPERIENCE AND AIMS TO UNDERSTAND AND IMPROVE KEY ASPECTS OF HEALTH-RELATED QUALITY OF LIFE (QOL), IDENTIFY RESEARCH QUESTIONS IMPORTANT TO COMMUNITY MEMBERS, AND PROVIDE VETTED RESOURCES AND OTHER RESEARCH OPPORTUNITIES TO PARTICIPANTS. AN IMPROVED VERSION OF THE REGISTRY WAS LAUNCHED IN SEPTEMBER OF 2023. NUMEROUS PRESENTATIONS AND ABSTRACTS WERE PRESENTED AND A MANUSCRIPT DETAILING ITS DEVELOPMENT WAS PUBLISHED IN A PEER REVIEWED JOURNAL.2024 CVR HIGHLIGHTS: - NBDF HAS A MULTIPRONG COMPREHENSIVE ENROLLMENT PLAN. CURRENT ENROLLMENT IS OVER 1,000 PARTICIPANTS. - THE ENROLLMENT, BASELINE SURVEY AND PARTICIPANT DASHBOARD ARE NOW IN BOTH ENGLISH AND SPANISH. VIRTUAL ADVISORY PANELS (VAPS) AND IN PERSON ADVISORY PANELS (PAPS): VAPS AND PAPS ARE VIRTUAL AND IN-PERSON FOCUS GROUPS. FOUR VAPS WERE FACILITATED IN 2024. A TOTAL OF 24 ADVISORS PARTICIPATED. INFORMATION GATHERED PROVIDED PATIENT/CAREGIVER INSIGHTS ON EDUCATIONAL RESOURCES, HEALTH LITERACY, CLINICAL TRIAL DESIGN, IDENTIFYING DISPARITIES AND GAPS IN CARE. RESEARCH JOURNAL CLUB: THE VIRTUAL RESEARCH JOURNAL CLUB WAS OPEN TO THE COMMUNITY, RESEARCHERS, CLINICIANS, AND CHAPTERS. IN 2024 NBDF HELD TWO SESSIONS.2024 NBDF RESEARCH GRANTS AWARDS: JUDITH GRAHAM POOL POSTDOCTORAL RESEARCH (JGP) - DR. HUONG CHAU AT STANFORD: ELUCIDATING INNATE IMMUNE RESPONSE TO FACTOR IX THROUGH HEMOPHILIA B MOUSE MODEL - DR. MARISSA BRAKE, BETH ISRAEL MEDICAL CENTER: THE ROLE OF TISSUE FACTOR IN BLOOD COAGULATION ACTIVATION AND BLEEDING RISK IN MICE AND HUMANSCAREER DEVELOPMENT AWARD: (CDA) FUNDED BY SANOFI - DR. BHAVYA DOSHI- CHOP TRANSFERRING TO EMORY 2025: UNRAVELING THE CYTOKINE AND CELLULAR IMMUNE RESPONSES UNDERLYING FVIII IMMUNOGENICITYEXCELLENCE AWARDS FOR NURSING, SOCIAL WORK, & PHYSICAL THERAPY: - NURSING: LOUISE BACA/MAINE HEALTH: OUTREACH IN RURAL MAINE: IDENTIFYING NEW PATIENTS AND ESTABLISHING SATELLITE SITES. - PHYSICAL THERAPY: JOHN DELOACH/ U OF FLORIDA: ASSESSING EFFECTS OF EXERCISE ON VASCULAR ACCESS, TRYPANOPHOBIA, AND KNESIOPHOBIA IN HEMOPHILIA PATIENTS. - SOCIAL WORK: KYELIN COOK/INTERMOUNTAIN HEALTHCARE FOUNDATION: (CONTRACTING PENDING) ADDRESSING GAPS IN CARE AMONG MENSTRUATING INDIVIDUALS IN UTAHNBDF-TAKEDA CLINICAL FELLOW DR. CALLIE BERKOWITZ, MD, UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL WAS SELECTED TO RECEIVE MENTORED-TRAINING IN 2024-2026COREHEM MENTAL HEALTH TOOL: DEVELOPED THROUGH AN INITIATIVE CO-LED BY NBDF, COREHEM MENTAL HEALTH OUTLOOK QUESTIONNAIRE (COREHEM-MHO) IS A PATIENT-REPORTED OUTCOME MEASUREMENT (PROM) INSTRUMENT THAT ASSESSES MENTAL HEALTH OUTLOOK (INCLUDING PSYCHOLOGICAL STATUS AND EMOTIONAL FUNCTIONING) ASSOCIATED WITH RECEIVING GENE THERAPY OR ANY DURABLE TREATMENT FOR HEMOPHILIA. THE COREHEM-MHO INSTRUMENT IS OWNED BY NBDF AND AVAILABLE FOR USE IN RESEARCH AND WITHIN CLINICAL TRIAL SETTINGS THROUGH A LICENSE AGREEMENT. THE PROJECT HAS 12 PEER-REVIEWED PUBLICATIONS TO DATE AND HAS BEEN PRESENTED AT TENS OF NATIONAL AND INTERNATIONAL MEDICAL CONFERENCES. WE ARE CURRENTLY COLLABORATING WITH 4 PARTNERS WHO ARE USING THE TOOL IN CLINICAL TRIALS AND PRACTICE. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $1,608,296 | ExpenseAmt |
| Grant | $78,717 | GrantAmt |
| Revenue | $0 | RevenueAmt |
| Desc | CHAPTER SERVICES NBDF'S CHAPTER SERVICES DEPARTMENT PROVIDES COMMUNITY SUPPORT BY HELPING ITS 52 MEMBER CHAPTERS OFFER EDUCATION, TRAINING, RESOURCES AND REFERRALS TO AFFECTED MEMBERS OF THE BLEEDING DISORDERS COMMUNITY IN THE AREAS THAT EACH CHAPTER SERVES. CHAPTER SERVICES OFFERS THE MEMBER CHAPTERS FINANCIAL SUPPORT IN THE FORM OF GRANTS AND COVERS SOME TRAVEL EXPENSES TO SUPPORT EDUCATION AND ADVOCACY MEETINGS. DEPARTMENT STAFF MEMBERS COACH CHAPTER LEADERS ON HOW TO CREATE, EXECUTE AND EVALUATE PROGRAMS AND SERVICES DESIGNED FOR THEIR AFFECTED CONSTITUENTS AS WELL AS ONGOING COACHING AND SUPPORT ON FINANCIAL SUSTAINABILITY, PROCESSES AND PROCEDURES FOR BEST NONPROFIT PRACTICE. IN 2024, CHAPTER SERVICES OFFERED 23 EDUCATIONAL WEBINAR SERIES SESSIONS, HELD ONE 4-DAY IN-PERSON NATIONAL LEADERSHIP SEMINAR OFFERING TRAINING, AND OFFERED A FULL "CHAPTER TRAINING TRACK" AT NBDF'S ANNUAL BLEEDING DISORDERS CONFERENCE. THESE EDUCATION OFFERINGS FOCUS ON DIVERSIFICATION OF FUNDING STRATEGIES, HEALTH EQUITY AND INCLUSION, BOARD DEVELOPMENT AND BUILDING. ADDITIONALLY, THE UNITE FOR BLEEDING DISORDERS WALK (PEER-TO-PEER FUNDRAISING CAMPAIGN), OVERSEEN AND PROVIDED BY THE CHAPTER SERVICES DEPARTMENT, EMPOWERED 5,696 PARTICIPANTS TO RAISE A COLLECTIVE $1.9M FOR THEIR LOCAL CHAPTERS. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $1,608,296 | TotalOtherProgSrvcExpenseAmt |
| Total Other Prog Srvc Grant | $78,717 | TotalOtherProgSrvcGrantAmt |
| Total Other Prog Srvc Revenue | $0 | TotalOtherProgSrvcRevenueAmt |
| Total Program Service Expenses | $14,619,765 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | Yes (1) | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | Yes (1) | ReportProgramRelatedInvstInd |
| Report Other Assets | 0 | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (1) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | Yes (1) | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | 0 | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | Yes (1) | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | Yes (1) | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | 0 | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | Yes (1) | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | 0 | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | Yes (1) | DisregardedEntityInd |
| Related Entity | 0 | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 84 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Employee | 99 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | Yes (1) | UnrelatedBusIncmOverLimitInd |
| Form990 T Filed | Yes (1) | Form990TFiledInd |
| Foreign Financial Account | 0 | ForeignFinancialAccountInd |
| Prohibited Tax Shelter Trans | 0 | ProhibitedTaxShelterTransInd |
| Taxable Party Notification | 0 | TaxablePartyNotificationInd |
| Nondeductible Contributions | 0 | NondeductibleContributionsInd |
| Quid Pro Quo Contributions | Yes (1) | QuidProQuoContributionsInd |
| Quid Pro Quo Contri Discl | Yes (1) | QuidProQuoContriDisclInd |
| Form8282 Property Disposed Of | 0 | Form8282PropertyDisposedOfInd |
| Rcv Fnds To Pay Prsnl Bnft Cntrct | 0 | RcvFndsToPayPrsnlBnftCntrctInd |
| Pay Premiums Prsnl Bnft Cntrct | 0 | PayPremiumsPrsnlBnftCntrctInd |
| Indoor Tanning Services | 0 | IndoorTanningServicesInd |
| Subj To Tax Rmnrtn Ex Prcht Pymt | 0 | SubjToTaxRmnrtnExPrchtPymtInd |
| Subject To Excs Tax Net Invst Inc | 0 | SubjectToExcsTaxNetInvstIncInd |
| Info In Schedule O Part VI | Yes (X) | InfoInScheduleOPartVIInd |
| Governing Body Voting Members | 13 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 13 | IndependentVotingMemberCnt |
| Family Or Business Rln | 0 | FamilyOrBusinessRlnInd |
| Delegation Of Mgmt Duties | 0 | DelegationOfMgmtDutiesInd |
| Change To Org Documents | 0 | ChangeToOrgDocumentsInd |
| Material Diversion Or Misuse | 0 | MaterialDiversionOrMisuseInd |
| Members Or Stockholders | Yes (1) | MembersOrStockholdersInd |
| Election Of Board Members | Yes (1) | ElectionOfBoardMembersInd |
| Decisions Subject To Approva | 0 | DecisionsSubjectToApprovaInd |
| Minutes Of Governing Body | Yes (1) | MinutesOfGoverningBodyInd |
| Minutes Of Committees | Yes (1) | MinutesOfCommitteesInd |
| Officer Mailing Address | 0 | OfficerMailingAddressInd |
| Local Chapters | Yes (1) | LocalChaptersInd |
| Policies Reference Chapters | Yes (1) | PoliciesReferenceChaptersInd |
| Form990 Provided To Gvrn Body | Yes (1) | Form990ProvidedToGvrnBodyInd |
| Conflict Of Interest Policy | Yes (1) | ConflictOfInterestPolicyInd |
| Annual Disclosure Covered Prsn | Yes (1) | AnnualDisclosureCoveredPrsnInd |
| Regular Monitoring Enfrc | Yes (1) | RegularMonitoringEnfrcInd |
| Whistleblower Policy | Yes (1) | WhistleblowerPolicyInd |
| Document Retention Policy | Yes (1) | DocumentRetentionPolicyInd |
| Compensation Process CEO | Yes (1) | CompensationProcessCEOInd |
| Compensation Process Other | Yes (1) | CompensationProcessOtherInd |
| Investment In Joint Venture | Yes (1) | InvestmentInJointVentureInd |
| Written Policy Or Procedure | Yes (1) | WrittenPolicyOrProcedureInd |
| States Where Copy Of Return Is Fld | AL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | AR | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | CO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | FL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | GA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | HI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | IL | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | KY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ME | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MD | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MS | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | MO | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NJ | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NM | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NY | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | NC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | ND | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OH | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OK | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | RI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | SC | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | TN | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | VA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | UT | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | PA | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | OR | StatesWhereCopyOfReturnIsFldCd |
| Own Website | Yes (X) | OwnWebsiteInd |
| Other Website | Yes (X) | OtherWebsiteInd |
| Upon Request | Yes (X) | UponRequestInd |
Books In Care Of Detail BooksInCareOfDetail
Business Name BusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | PETER HARVEY | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 2123283700 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1230 AVENUE OF THE AMERICAS 16TH FL | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10020 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (23 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Key EmployeeKeyEmployeeInd | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|---|
| RYAN GRIFFITH | ||||||||
| CHAIR | 10.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| SUSAN HARTMANN | ||||||||
| VICE CHAIR | 10.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| JOSEPH ALIOTO MD | ||||||||
| TREASURER | 10.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| PAULETTE BRYANT MD | ||||||||
| SECRETARY | 10.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| JAMES R CHRISTENSEN | ||||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | |||
| JOSEPH J HELFERT II | ||||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | |||
| PETER A KOUIDES MD | ||||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | |||
| MEGAN LEE | ||||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | |||
| ZIVA MANN | ||||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | |||
| SCOTT MILLER CPA ESQ | ||||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | |||
| SHARON RICHARDSON PHD | ||||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | |||
| LUCAS TAYLOR | ||||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | |||
| KELLY WORNALL | ||||||||
| DIRECTOR | 10.00 | Yes (X) | $0 | $0 | $0 | |||
| LEONARD VALENTINO | ||||||||
| PRESIDENT & CEO - THRU 3/31/24 | 40.00 | Yes (X) | $135,983 | $0 | $15,154 | |||
| PHILIP GATTONE | ||||||||
| PRESIDENT & CEO | 40.00 | Yes (X) | $333,391 | $0 | $16,974 | |||
| PETER HARVEY | ||||||||
| CHIEF BUSINESS OFFICER | 40.00 | Yes (X) | $214,515 | $0 | $76,019 | |||
| MICHAEL RECHT | ||||||||
| CHIEF SCIENTIFIC OFFICER | 40.00 | $398,637 | $0 | $16,657 | Yes (X) | |||
| SANDRA D ROTELLINI | ||||||||
| CHIEF OPERATING OFFICER | 40.00 | $219,819 | $0 | $56,471 | Yes (X) | |||
| TERI WILLEY | ||||||||
| MANAGING DIRECTOR | 40.00 | $306,003 | $0 | $42,675 | Yes (X) | |||
| NATHAN SCHAEFER | ||||||||
| S.V.P. OF PUBLIC POLICY | 40.00 | $175,228 | $0 | $61,297 | Yes (X) | |||
| TIMOTHY BRENT | ||||||||
| VENTURE PRINCIPAL | 40.00 | $175,948 | $0 | $70,987 | Yes (X) | |||
| KERI NORRIS SVP OF HEALTH | ||||||||
| ACCESS & STRATEGIC INNOVATION | 40.00 | $178,161 | $0 | $46,804 | Yes (X) | |||
| RENEE PECK | ||||||||
| SENIOR DEVELOPMENT DIRECTOR | 40.00 | $205,808 | $0 | $4,462 | Yes (X) | |||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $2,343,493 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $0 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $407,500 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 28 | IndivRcvdGreaterThan100KCnt |
| Former Ofcr Employees Listed | 0 | FormerOfcrEmployeesListedInd |
| Total Comp Greater Than150 K | Yes (1) | TotalCompGreaterThan150KInd |
| Compensation From Other Srcs | 0 | CompensationFromOtherSrcsInd |
Contractor Compensation ContractorCompensationGrp (5 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt | Address Line1ContractorAddress/ForeignAddress/AddressLine1Txt | CityContractorAddress/ForeignAddress/CityNm | Province Or StateContractorAddress/ForeignAddress/ProvinceOrStateNm | CountryContractorAddress/ForeignAddress/CountryCd | Foreign PostalContractorAddress/ForeignAddress/ForeignPostalCd |
|---|---|---|---|---|---|---|---|---|---|---|
| MANIFEST LLC | ||||||||||
| 4110 N SCOTTSDALE ROAD SUITE 315 | SCOTTSDALE | AZ | 85251 | PRODUCTION/HEMAWARE PUBLICATION | $481,417 | |||||
| IMPACT EDUCATION LLC | ||||||||||
| 589 SKIPPACK PIKE SUITE 200 | BLUE BELL | PA | 19422 | CONSULTANT FOR MEDICAL EDUCATION | $308,014 | |||||
| CCR SOLUTIONS INC | ||||||||||
| 25 WALPOLE SOUTH BOULEVARD 1 UNI | WALPOLE | MA | 02081 | AUDIOVISUAL SERVICES | $227,500 | |||||
| ARTEMIS POLICY GROUP LLC | ||||||||||
| 1150 CONNECTICUT AVE NW STE 803 | WASHINGTON | DC | 20036 | STRATEGIC ADVISORY SERVICES | $187,500 | |||||
| ETK COMMUNICATIONS | ||||||||||
| LEADERSHIP SOLUTION SERVICES | $137,738 | 7730 RUE DE BORDEAUX | MONTREAL | QUEBEC | CA | H2E 2NL | ||||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 7 | CntrctRcvdGreaterThan100KCnt |
| Federated Campaigns | $8,140 | FederatedCampaignsAmt |
| Fundraising | $446,290 | FundraisingAmt |
| Government Grants | $547,874 | GovernmentGrantsAmt |
| All Other Contributions | $12,692,212 | AllOtherContributionsAmt |
| Total Contributions | $13,694,516 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Unrelated Business RevenueUnrelatedBusinessRevenueAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|---|
| EDUCATIONAL/MEDICAL LITERATURE | 541800 | $883,237 | $883,237 | |
| EDUCATION SEMINARS | 611710 | $324,571 | $324,571 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $1,207,808 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $802,935 | TotalRevenueColumnAmt |
| Exclusion | $802,935 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $3,078,261 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $2,137,904 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $940,357 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $940,357 | TotalRevenueColumnAmt |
| Exclusion | $940,357 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $65,782 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $446,290 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $152,886 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$87,104 | TotalRevenueColumnAmt |
| Exclusion | -$87,104 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | CREDIT CARD REBATE | Desc |
| Business | 900099 | BusinessCd |
| Total Revenue Column | $11,625 | TotalRevenueColumnAmt |
| Exclusion | $11,625 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $11,625 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $16,570,137 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $324,571 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $883,237 | UnrelatedBusinessRevenueAmt |
| Exclusion | $1,667,813 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,014,936 | TotalAmt |
| Program Services | $1,014,936 | ProgramServicesAmt |
Grants To Domestic Individuals GrantsToDomesticIndividualsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $118,384 | TotalAmt |
| Program Services | $118,384 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,000 | TotalAmt |
| Program Services | $5,000 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,483,619 | TotalAmt |
| Program Services | $717,341 | ProgramServicesAmt |
| Management And General | $766,278 | ManagementAndGeneralAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,313,988 | TotalAmt |
| Program Services | $4,999,069 | ProgramServicesAmt |
| Management And General | $1,497,008 | ManagementAndGeneralAmt |
| Fundraising | $817,911 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $540,744 | TotalAmt |
| Program Services | $387,503 | ProgramServicesAmt |
| Management And General | $120,731 | ManagementAndGeneralAmt |
| Fundraising | $32,510 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,267,383 | TotalAmt |
| Program Services | $840,902 | ProgramServicesAmt |
| Management And General | $263,938 | ManagementAndGeneralAmt |
| Fundraising | $162,543 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $631,653 | TotalAmt |
| Program Services | $403,615 | ProgramServicesAmt |
| Management And General | $152,047 | ManagementAndGeneralAmt |
| Fundraising | $75,991 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $3,271 | TotalAmt |
| Management And General | $3,271 | ManagementAndGeneralAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $59,000 | TotalAmt |
| Management And General | $59,000 | ManagementAndGeneralAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $187,500 | TotalAmt |
| Program Services | $187,500 | ProgramServicesAmt |
Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $58,801 | TotalAmt |
| Management And General | $58,801 | ManagementAndGeneralAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,795,977 | TotalAmt |
| Program Services | $1,565,647 | ProgramServicesAmt |
| Management And General | $213,748 | ManagementAndGeneralAmt |
| Fundraising | $16,582 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $14,463 | TotalAmt |
| Program Services | $13,073 | ProgramServicesAmt |
| Management And General | $1,390 | ManagementAndGeneralAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $285,822 | TotalAmt |
| Program Services | $219,472 | ProgramServicesAmt |
| Management And General | $44,851 | ManagementAndGeneralAmt |
| Fundraising | $21,499 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $399,711 | TotalAmt |
| Program Services | $322,473 | ProgramServicesAmt |
| Management And General | $52,778 | ManagementAndGeneralAmt |
| Fundraising | $24,460 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $107,827 | TotalAmt |
| Program Services | $39,968 | ProgramServicesAmt |
| Management And General | $62,307 | ManagementAndGeneralAmt |
| Fundraising | $5,552 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,467,756 | TotalAmt |
| Program Services | $1,301,077 | ProgramServicesAmt |
| Management And General | $85,663 | ManagementAndGeneralAmt |
| Fundraising | $81,016 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,480,100 | TotalAmt |
| Program Services | $1,374,359 | ProgramServicesAmt |
| Management And General | $90,488 | ManagementAndGeneralAmt |
| Fundraising | $15,253 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $21,866 | TotalAmt |
| Program Services | $14,628 | ProgramServicesAmt |
| Management And General | $5,012 | ManagementAndGeneralAmt |
| Fundraising | $2,226 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $84,256 | TotalAmt |
| Program Services | $57,489 | ProgramServicesAmt |
| Management And General | $14,112 | ManagementAndGeneralAmt |
| Fundraising | $12,655 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Management And GeneralManagementAndGeneralAmt | Program ServicesProgramServicesAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| UBIT | $18,317 | $18,317 | ||
| STATIONERY AND PRINTING | $538,956 | $5,922 | $527,732 | $5,302 |
| MEMBERSHIP DUES | $390,296 | $100,878 | $218,238 | $71,180 |
| PROGRAM SUPPLIES | $298,088 | $17,962 | $270,027 | $10,099 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $58,935 | TotalAmt |
| Program Services | $21,332 | ProgramServicesAmt |
| Management And General | $35,223 | ManagementAndGeneralAmt |
| Fundraising | $2,380 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $19,646,649 | TotalAmt |
| Program Services | $14,619,765 | ProgramServicesAmt |
| Management And General | $3,669,725 | ManagementAndGeneralAmt |
| Fundraising | $1,357,159 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $7,217,991 | BOYAmt |
| EOY | $4,943,233 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $520,560 | BOYAmt |
| EOY | $523,074 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,474,349 | BOYAmt |
| EOY | $1,039,650 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $16,000 | EOYAmt |
Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $0 | BOYAmt |
| EOY | $2,875 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $484,222 | BOYAmt |
| EOY | $329,625 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $109,328 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $90,196 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $40,998 | BOYAmt |
| EOY | $19,132 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $22,412,096 | BOYAmt |
| EOY | $21,794,651 | EOYAmt |
Investments Program Related InvestmentsProgramRelatedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $806,849 | BOYAmt |
| EOY | $1,626,904 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $531,486 | BOYAmt |
| EOY | $518,325 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $33,488,551 | BOYAmt |
| EOY | $30,813,469 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,147,290 | BOYAmt |
| EOY | $1,977,199 | EOYAmt |
Grants Payable GrantsPayableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $899,697 | BOYAmt |
| EOY | $933,044 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $219,085 | BOYAmt |
| EOY | $29,337 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $522,506 | BOYAmt |
| EOY | $509,744 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,788,578 | BOYAmt |
| EOY | $3,449,324 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $20,009,403 | BOYAmt |
| EOY | $18,818,497 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,690,570 | BOYAmt |
| EOY | $8,545,648 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $29,699,973 | BOYAmt |
| EOY | $27,364,145 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $33,488,551 | BOYAmt |
| EOY | $30,813,469 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$3,076,512 | ReconcilationRevenueExpnssAmt |
| Net Unrlzd Gains Losses Invst | $740,684 | NetUnrlzdGainsLossesInvstAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| Info In Schedule O Part XII | Yes (X) | InfoInScheduleOPartXIIInd |
| Method Of Accounting Accrual | Yes (X) | MethodOfAccountingAccrualInd |
| Accountant Compile Or Review | 0 | AccountantCompileOrReviewInd |
| FS Audited | Yes (1) | FSAuditedInd |
FS Audited Basis FSAuditedBasisGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Consolidated Basis Fincl Stmt | Yes (X) | ConsolidatedBasisFinclStmtInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Audit Committee | Yes (1) | AuditCommitteeInd |
| Federal Grant Audit Required | 0 | FederalGrantAuditRequiredInd |
Schedule A IRS990ScheduleA
| Field | Value | IRS element (for citing) |
|---|---|---|
| Public Organization170 | Yes (X) | PublicOrganization170Ind |
Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $19,810,154 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $22,875,439 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $16,663,253 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $16,322,358 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $13,694,516 | CurrentTaxYearAmt |
| Total | $89,365,720 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $19,810,154 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $22,875,439 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $16,663,253 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $16,322,358 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $13,694,516 | CurrentTaxYearAmt |
| Total | $89,365,720 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $46,162,395 | SubstantialContributorsTotAmt |
| Public Support Total170 | $43,203,325 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $730,271 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $770,403 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $402,236 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $694,613 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $802,935 | CurrentTaxYearAmt |
| Total | $3,400,458 | TotalAmt |
Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $105,704 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $306,003 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $342,256 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $128,822 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $50,082 | CurrentTaxYearAmt |
| Total | $932,867 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $26,071 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,408 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $15,059 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $513,328 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $11,625 | CurrentTaxYearAmt |
| Total | $567,491 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $94,266,536 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $931,792 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.45830 | PublicSupportCY170Pct |
| Public Support PY170 | 0.45720 | PublicSupportPY170Pct |
| Thirty Thr Pct Suprt Tests CY170 | Yes (X) | ThirtyThrPctSuprtTestsCY170Ind |
Schedule B IRS990ScheduleB
Contributor Information ContributorInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Contributor | RESTRICTED | ContributorNum |
Contributor Business Name ContributorBusinessName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RESTRICTED | BusinessNameLine1 |
Contributor US Address ContributorUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | RESTRICTED | AddressLine1 |
| Address Line2 | RESTRICTED | AddressLine2 |
| City | RESTRICTED | City |
| State | RESTRICTED | State |
| ZIP Code | RESTRICTED | ZIPCode |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Contributions | RESTRICTED | TotalContributionsAmt |
Schedule C IRS990ScheduleC
| Field | Value | IRS element (for citing) |
|---|---|---|
| Volunteers | Yes (1) | VolunteersInd |
| Paid Staff Or Management | Yes (1) | PaidStaffOrManagementInd |
| Media Advertisements | 0 | MediaAdvertisementsInd |
| Mailings Members | Yes (1) | MailingsMembersInd |
| Mailings Members | $14,094 | MailingsMembersAmt |
| Publications Or Broadcast | 0 | PublicationsOrBroadcastInd |
| Grants Other Organizations | 0 | GrantsOtherOrganizationsInd |
| Direct Contact Legislators | Yes (1) | DirectContactLegislatorsInd |
| Direct Contact Legislators | $224,452 | DirectContactLegislatorsAmt |
| Rallies Demonstrations | Yes (1) | RalliesDemonstrationsInd |
| Rallies Demonstrations | $39,243 | RalliesDemonstrationsAmt |
| Other Activities | 0 | OtherActivitiesInd |
| Total Lobbying Expenditures | $277,789 | TotalLobbyingExpendituresAmt |
| Not Described Section501c3 | 0 | NotDescribedSection501c3Ind |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART II-B, LINE 1: | FormAndLineReferenceDesc |
| Explanation | 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 NBDF'S ANNUAL GRASSROOTS EVENT WHICH PROVIDED OPPORTUNITIES FOR PATIENTS TO CONNECT WITH MEMBERS OF CONGRESS. | ExplanationTxt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,916,569 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $209,638 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $78,078 | OtherExpendituresAmt |
| End Year Balance | $2,048,129 | EndYearBalanceAmt |
CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,785,311 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $131,258 | InvestmentEarningsOrLossesAmt |
| End Year Balance | $1,916,569 | EndYearBalanceAmt |
CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $2,146,385 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | -$361,074 | InvestmentEarningsOrLossesAmt |
| End Year Balance | $1,785,311 | EndYearBalanceAmt |
CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,983,771 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $211,918 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $49,304 | OtherExpendituresAmt |
| End Year Balance | $2,146,385 | EndYearBalanceAmt |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $1,795,609 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | $203,554 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $15,392 | OtherExpendituresAmt |
| End Year Balance | $1,983,771 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Prmnnt Endowment Balance EOY | 0.73238 | PrmnntEndowmentBalanceEOYPct |
| Term Endowment Balance EOY | 0.26762 | TermEndowmentBalanceEOYPct |
| Endowments Held Unrelated Org | 0 | EndowmentsHeldUnrelatedOrgInd |
| Endowments Held Related Org | 0 | EndowmentsHeldRelatedOrgInd |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $109,328 | OtherCostOrOtherBasisAmt |
| Depreciation | $90,196 | DepreciationAmt |
| Book Value | $19,132 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $19,132 | TotalBookValueLandBuildingsAmt |
Invst Program Related Org InvstProgramRelatedOrgGrp (4 entries)
| DescDesc | Book ValueBookValueAmt | Method ValuationMethodValuationCd |
|---|---|---|
| POSTER CHILD FILM | $50,000 | C |
| ANVESANA | $276,904 | C |
| SPARK BIOMEDICAL INC. | $600,000 | C |
| BE BIOPHARMA INC. | $700,000 | C |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Program Rltd | $1,626,904 | TotalBookValueProgramRltdAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)
| DescDesc | AmtAmt |
|---|---|
| DEFERRED PENSION LIABILITY | $469,986 |
| OPERATING LEASE LIABILITIES | $39,758 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $509,744 | TotalLiabilityAmt |
| Footnote Text | Yes (X) | FootnoteTextInd |
| Total Rev Etc Audited Fincl Stmt | $17,404,906 | TotalRevEtcAuditedFinclStmtAmt |
| Net Unrealized Gains Invst | $740,684 | NetUnrealizedGainsInvstAmt |
| Other Revenue | $152,886 | OtherRevenueAmt |
| Revenue Not Reported | $893,570 | RevenueNotReportedAmt |
| Revenue Subtotal | $16,511,336 | RevenueSubtotalAmt |
| Investment Expenses Not Incld | $58,801 | InvestmentExpensesNotIncldAmt |
| Revenue Not Reported Fincl Stmt | $58,801 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $16,570,137 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $19,740,734 | TotExpnsEtcAuditedFinclStmtAmt |
| Other Expenses Included | $152,886 | OtherExpensesIncludedAmt |
| Expenses Not Reported | $152,886 | ExpensesNotReportedAmt |
| Expenses Subtotal | $19,587,848 | ExpensesSubtotalAmt |
| Investment Expenses Not Incld2 | $58,801 | InvestmentExpensesNotIncld2Amt |
| Expenses Not Rpt Fincl Stmt | $58,801 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $19,646,649 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (4 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| 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 $548,129 AND $416,569 AS OF DECEMBER 31, 2024 AND 2023, 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 2021. |
| PART XI, LINE 2D - OTHER ADJUSTMENTS: | SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 152,886. |
| PART XII, LINE 2D - OTHER ADJUSTMENTS: | SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 152,886. |
Schedule F IRS990ScheduleF
Account Activities Outside US AccountActivitiesOutsideUSGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Region | NORTH AMERICA | RegionTxt |
| Offices | 0 | OfficesCnt |
| Employee | 1 | EmployeeCnt |
| Type Of Activities Conducted | PROGRAM SERVICES | TypeOfActivitiesConductedTxt |
| Specific Services Provided | LEADERSHIP SOLUTION SERVICES | SpecificServicesProvidedTxt |
| Region Total Expenditures | $137,738 | RegionTotalExpendituresAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Subtotal Offices | 0 | SubtotalOfficesCnt |
| Subtotal Employees | 1 | SubtotalEmployeesCnt |
| Continuation Total Office | 0 | ContinuationTotalOfficeCnt |
| Continuation Total Employee | 0 | ContinuationTotalEmployeeCnt |
| Total Office | 0 | TotalOfficeCnt |
| Total Employee | 1 | TotalEmployeeCnt |
| Subtotal Spent | $137,738 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $137,738 | TotalSpentAmt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | RED TIE SOIREE | Event1Nm |
| Gross Receipts Event1 | $236,340 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $219,990 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $16,350 | GrossRevenueEvent1Amt |
| Rent Facility Costs Event1 | $13,834 | RentFacilityCostsEvent1Amt |
| Food And Beverage Event1 | $43,812 | FoodAndBeverageEvent1Amt |
| Entertainment Event1 | $4,750 | EntertainmentEvent1Amt |
| Other Direct Expenses Event1 | $20,572 | OtherDirectExpensesEvent1Amt |
| Event2 | WALKS | Event2Nm |
| Gross Receipts Event2 | $204,056 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $169,547 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $34,509 | GrossRevenueEvent2Amt |
| Cash Prizes Event2 | $25 | CashPrizesEvent2Amt |
| Non Cash Prizes Event2 | $309 | NonCashPrizesEvent2Amt |
| Rent Facility Costs Event2 | $1,795 | RentFacilityCostsEvent2Amt |
| Food And Beverage Event2 | $2,579 | FoodAndBeverageEvent2Amt |
| Entertainment Event2 | $1,866 | EntertainmentEvent2Amt |
| Other Direct Expenses Event2 | $27,934 | OtherDirectExpensesEvent2Amt |
| Other Events Total | 5 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $71,676 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $56,753 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $14,923 | GrossRevenueOtherEventsAmt |
| Cash Prizes Other Events | $385 | CashPrizesOtherEventsAmt |
| Non Cash Prizes Other Events | $452 | NonCashPrizesOtherEventsAmt |
| Rent Fclty Costs Other Events | $5,900 | RentFcltyCostsOtherEventsAmt |
| Food And Beverage Other Events | $10,447 | FoodAndBeverageOtherEventsAmt |
| Entertainment Other Events | $300 | EntertainmentOtherEventsAmt |
| Oth Direct Expnss Other Events | $17,926 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $512,072 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $446,290 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $65,782 | GrossRevenueTotalEventsAmt |
| Cash Prizes Total Events | $410 | CashPrizesTotalEventsAmt |
| Non Cash Prizes Total Events | $761 | NonCashPrizesTotalEventsAmt |
| Rent Fclty Costs Total Events | $21,529 | RentFcltyCostsTotalEventsAmt |
| Food And Beverage Total Events | $56,838 | FoodAndBeverageTotalEventsAmt |
| Entertainment Total Events | $6,916 | EntertainmentTotalEventsAmt |
| Oth Direct Expnss Total Events | $66,432 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $152,886 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$87,104 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (23 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Non Cash AssistanceNonCashAssistanceAmt | Purpose Of GrantPurposeOfGrantTxt | Address Line2USAddress/AddressLine2Txt |
|---|---|---|---|---|---|---|---|---|---|
| UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL | |||||||||
| 135 DAUER DRIVE | CHAPEL HILL | NC | 27599 | 566001393 | 501(C)(3) | $200,000 | $0 | CLINICAL FELLOWSHIP AWARD | |
| THE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY | |||||||||
| PO BOX 884253 | LOS ANGELES | CA | 90088 | 941156365 | 501(C)(3) | $104,000 | $0 | RESEARCH JUDITH GRAHAM POOL AWARD | |
| BETH ISRAEL DEACONESS MEDICAL CENTER | |||||||||
| 330 BROOKLINE AVENUE | BOSTON | MA | 02215 | 042103881 | 501(C)(3) | $104,000 | $0 | RESEARCH JUDITH GRAHAM POOL AWARD | |
| WORLD FEDERATION OF HEMOPHILIA USA | |||||||||
| PMB 142 911 CENTRAL AVENUE | ALBANY | NY | 12206 | 161513923 | 501(C)(3) | $90,000 | $0 | WOMEN & GIRLS WITH BLEEDING DISORDERS, AND CHAPTERS CHALLENGE GRANTS | |
| EMORY UNIVERSITY | |||||||||
| 1599 CLIFTON ROAD NORTHEAST 4TH | ATLANTA | GA | 30322 | 580566256 | 501(C)(3) | $70,000 | $0 | CAREER DEVELOPMENT AWARD | FLOOR |
| BRIGHAM AND WOMEN'S HOSPITAL | |||||||||
| 75 FRANCIS STREET | BOSTON | MA | 02115 | 042312909 | 501(C)(3) | $70,000 | $0 | CAREER DEVELOPMENT AWARD | |
| ASOCIACION PUERTORRIQUENA DE HEMOFILIA | |||||||||
| PMB 633 PO BOX 29005 00929-0005 | SAN JUAN | PR | 00929 | 660559280 | 501(C)(3) | $18,000 | $0 | STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS | |
| INTERMOUNTAIN HEALTHCARE FOUNDATION INC | |||||||||
| 36 SOUTH STATE STREET | SALT LAKE CITY | UT | 84111 | 800225150 | 501(C)(3) | $15,000 | $0 | SOCIAL WORK EXCELLENCE FELLOWSHIP | |
| UNIVERSITY OF FLORIDA | |||||||||
| 300 SOUTHWEST 13TH STREET | GAINESVILLE | FL | 32611 | 596002052 | 501(C)(3) | $15,000 | $0 | PHYSICAL THERAPY EXCELLENCE FELLOWSHIP | |
| MAINE HEALTH | |||||||||
| ONE DANA COURT | WESTBROOK | ME | 04092 | 010238552 | 501(C)(3) | $15,000 | $0 | NURSING EXCELLENCE FELLOWSHIP | |
| BLEEDING DISORDER ASSOCIATION OF SC | |||||||||
| 25 WOODS LAKE ROAD SUITE 300 | GREENVILLE | SC | 29607 | 237400632 | 501(C)(3) | $14,000 | $0 | STATE BASED ADVOCACY COALITION & CHAPTER CAPACITY GRANTS | |
| HEMOPHILIA FOUNDATION OF MICHIGAN | |||||||||
| 1921 WEST MICHIGAN AVENUE | YPSILANTI | MI | 48197 | 381905673 | 501(C)(3) | $14,000 | $0 | CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS | |
| WESTERN PENNSYLVANIA BLEEDING DISORDERS | |||||||||
| 775 FOURTH STREET 1ST FLOOR | BEAVER | PA | 15009 | 251359331 | 501(C)(3) | $13,500 | $0 | STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS | |
| GREAT LAKES HEMOPHILIA FOUNDATION | |||||||||
| 638 NORTH 18TH STREET SUITE 108 | MILWAUKEE | WI | 53233 | 237367636 | 501(C)(3) | $13,500 | $0 | STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS | |
| GREATER OHIO BLEEDING DISORDERS FOUNDATION | |||||||||
| 17407 LORAIN AVENUE 206 | CLEVELAND | OH | 44111 | 341018501 | 501(C)(3) | $12,500 | $0 | STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS | |
| PACIFIC NORTHWEST BLEEDING DISORDERS | |||||||||
| 456 SOUTHWEST MONROE AVENUE | CORVALLIS | OR | 97333 | 930551733 | 501(C)(3) | $12,500 | $0 | STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS | |
| BLEEDING DISORDERS FOUNDATION OF NC | |||||||||
| 260 TOWN HALL DRIVE A | MORRISVILLE | NC | 27560 | 561273974 | 501(C)(3) | $12,000 | $0 | STATE BASED ADVOCACY COALITION GRANT | |
| HEMOPHILIA COUNCIL OF CALIFORNIA | |||||||||
| 717 K STREET 501 | SACRAMENTO | CA | 95814 | 680182998 | 501(C)(3) | $11,500 | $0 | STATE BASED ADVOCACY COALITION GRANT | |
| TEXAS CENTRAL BLEEDING DISORDERS | |||||||||
| 12700 HILLCREST ROAD 191 | DALLAS | TX | 75230 | 751187148 | 501(C)(3) | $8,750 | $0 | STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS | |
| GATEWAY HEMOPHLIA ASSOCIATION | |||||||||
| 4976 EICHELBERGER STREET | ST LOUIS | MO | 63109 | 431447057 | 501(C)(3) | $8,500 | $0 | STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS | |
| NEW ENGLAND HEMOPHILIA ASSOCIATION | |||||||||
| 347 WASHINGTON STREET SUITE 402 | DEDHAM | MA | 02026 | 046111861 | 501(C)(3) | $6,000 | $0 | STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS | |
| VIRGINIA HEMOPHILIA FOUNDATION | |||||||||
| 9702 GAYTON ROAD SUITE 277 | RICHMOND | VA | 23238 | 541183181 | 501(C)(3) | $5,500 | $0 | CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS | |
| BLEEDING DISORDER ALLIANCE OF N DAKOTA | |||||||||
| PO BOX 548 | FARGO | ND | 58107 | 471684681 | 501(C)(3) | $5,250 | $0 | CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS | |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 23 | Total501c3OrgCnt |
| Total Other Org | 0 | TotalOtherOrgCnt |
Grants Other Asst To Indiv In US GrantsOtherAsstToIndivInUSGrp (3 entries)
| Grant TypeGrantTypeTxt | RecipientRecipientCnt | Cash GrantCashGrantAmt |
|---|---|---|
| CHAPTERS EMERGENCY FINANCIAL ASSISTANCE TO FAMILIES WITH BLEEDING DISORDERS | 92 | $13,700 |
| SCHOLARSHIP AWARD | 1 | $1,000 |
| TRAVEL GRANTS TO ANNUAL CONFERENCE | 119 | $103,684 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | BASED ON THE NBDF REQUIREMENTS, ALL CHAPTERS THAT WERE AWARDED GRANTS PROVIDE QUARTERLY PROGRAM AND FINANCIAL REPORTS REGARDING THEIR GRANTS WITH NBDF. ONLY AFTER SUBMISSION OF A QUARTERLY PROGRAM REPORT DESCRIBING THEIR PROGRESS IN COMPLETING DELINEATED TASKS AND COMPLETE FINANCIAL REPORTING NBDF 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 NBDF TO ABIDE BY OUR ORGANIZATION'S GRANT POLICIES AND PROCEDURES, WHICH ALSO INCLUDES A DESCRIPTION OF AUTHORIZED AND UNAUTHORIZED EXPENSES. | ExplanationTxt |
Schedule J IRS990ScheduleJ
| Field | Value | IRS element (for citing) |
|---|---|---|
| Compensation Committee | Yes (X) | CompensationCommitteeInd |
| Independent Consultant | Yes (X) | IndependentConsultantInd |
| Compensation Survey | Yes (X) | CompensationSurveyInd |
| Board Or Committee Approval | Yes (X) | BoardOrCommitteeApprovalInd |
| Severance Payment | 0 | SeverancePaymentInd |
| Supplemental Nonqual Rtr Plan | 0 | SupplementalNonqualRtrPlanInd |
| Equity Based Comp Arrngm | 0 | EquityBasedCompArrngmInd |
| Comp Based On Revenue Of Flng Org | 0 | CompBasedOnRevenueOfFlngOrgInd |
| Comp Bsd On Rev Related Orgs | 0 | CompBsdOnRevRelatedOrgsInd |
| Comp Bsd Net Earns Flng Org | 0 | CompBsdNetEarnsFlngOrgInd |
| Comp Bsd Net Earns Rltd Orgs | 0 | CompBsdNetEarnsRltdOrgsInd |
| Any Non Fixed Payments | Yes (1) | AnyNonFixedPaymentsInd |
| Initial Contract Exception | 0 | InitialContractExceptionInd |
Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (10 entries)
| TitleTitleTxt | Base Compensation Filing OrgBaseCompensationFilingOrgAmt | Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt | Bonus Filing OrganizationBonusFilingOrganizationAmount | Bonus Related OrganizationsBonusRelatedOrganizationsAmt | Other Compensation Filing OrgOtherCompensationFilingOrgAmt | Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt | Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt | Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt | Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt | Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt | Total Compensation Filing OrgTotalCompensationFilingOrgAmt | Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt | Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt | Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| MICHAEL RECHT | ||||||||||||||
| CHIEF SCIENTIFIC OFFICER | $370,865 | $0 | $25,000 | $0 | $2,772 | $0 | $16,297 | $0 | $360 | $0 | $415,294 | $0 | $0 | $0 |
| PHILIP GATTONE | ||||||||||||||
| PRESIDENT & CEO | $302,939 | $0 | $28,000 | $0 | $2,452 | $0 | $0 | $0 | $16,974 | $0 | $350,365 | $0 | $0 | $0 |
| TERI WILLEY | ||||||||||||||
| MANAGING DIRECTOR | $302,808 | $0 | $0 | $0 | $3,195 | $0 | $19,144 | $0 | $23,531 | $0 | $348,678 | $0 | $0 | $0 |
| PETER HARVEY | ||||||||||||||
| CHIEF BUSINESS OFFICER | $211,743 | $0 | $0 | $0 | $2,772 | $0 | $23,771 | $0 | $52,248 | $0 | $290,534 | $0 | $0 | $0 |
| SANDRA D ROTELLINI | ||||||||||||||
| CHIEF OPERATING OFFICER | $217,047 | $0 | $0 | $0 | $2,772 | $0 | $31,316 | $0 | $25,155 | $0 | $276,290 | $0 | $0 | $0 |
| TIMOTHY BRENT | ||||||||||||||
| VENTURE PRINCIPAL | $174,658 | $0 | $0 | $0 | $1,290 | $0 | $18,739 | $0 | $52,248 | $0 | $246,935 | $0 | $0 | $0 |
| NATHAN SCHAEFER | ||||||||||||||
| S.V.P. OF PUBLIC POLICY | $174,808 | $0 | $0 | $0 | $420 | $0 | $25,341 | $0 | $35,956 | $0 | $236,525 | $0 | $0 | $0 |
| KERI NORRIS SVP OF HEALTH | ||||||||||||||
| ACCESS & STRATEGIC INNOVATION | $177,531 | $0 | $0 | $0 | $630 | $0 | $17,573 | $0 | $29,231 | $0 | $224,965 | $0 | $0 | $0 |
| RENEE PECK | ||||||||||||||
| SENIOR DEVELOPMENT DIRECTOR | $205,118 | $0 | $0 | $0 | $690 | $0 | $4,102 | $0 | $360 | $0 | $210,270 | $0 | $0 | $0 |
| LEONARD VALENTINO | ||||||||||||||
| PRESIDENT & CEO - THRU 3/31/24 | $98,444 | $0 | $36,800 | $0 | $739 | $0 | $9,170 | $0 | $5,984 | $0 | $151,137 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 7 | FormAndLineReferenceDesc |
| Explanation | THE FORM AND AMOUNT OF ANY PERFORMANCE BONUSES 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. | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (7 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| 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). 990 PART VI, SECTION B, LINE 15B 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/CBO/HR. THIS WAS LAST UNDERTAKEN IN 2023. |
| 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.BLEEDING.ORG OR UPON WRITTEN REQUEST OR BY CALLING THE ORGANIZATION DIRECTLY. |
| FORM 990, PART XII, LINE 2C: | THE ORGANIZATION HAS A COMMITTEE THAT ASSUMES RESPONSIBILITY FOR OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF THE INDEPENDENT ACCOUNTANT. THIS PROCESS IS UNCHANGED FROM THE PRIOR YEAR. |
Schedule R IRS990ScheduleR
Id Disregarded Entities IdDisregardedEntitiesGrp
Disregarded Entity Name DisregardedEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | NATIONAL BLEEDING DISORDERS FOUNDATION VENTURE FUND LLC | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 1230 AVENUE OF THE AMERICAS 16TH FL | AddressLine1Txt |
| City | NEW YORK | CityNm |
| State Abbreviation | NY | StateAbbreviationCd |
| ZIP | 10020 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 393522973 | EIN |
| Primary Activities | SEE SCHEDULE R, PART VII SUPPLEMENTAL INFORMATION | PrimaryActivitiesTxt |
| Legal Domicile State | DE | LegalDomicileStateCd |
| Total Income | $32,058 | TotalIncomeAmt |
| End Of Year Assets | $2,134,716 | EndOfYearAssetsAmt |
Direct Controlling Entity Name DirectControllingEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | NATIONAL BLEEDING DISORDER FOUNDATION | BusinessNameLine1Txt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | SCHEDULE R, PART I, COLUMN B | FormAndLineReferenceDesc |
| Explanation | FUND RESEARCH INTO NEW TREATMENTS AND CURES FOR INHERITABLE BLOOD AND BLEEDING DISORDERS. | ExplanationTxt |