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← HEMOPHILIA FEDERATION OF AMERICA INC

Form 990 for tax year 2022

Filed by HEMOPHILIA FEDERATION OF AMERICA INC.

Totals

Total revenue
$5,559,810
Total expenses
$5,864,407
Contributions and grants received
$3,613,216
Grants paid
$851,801
Program service revenue
$1,947,269
Investment income
$0
Other revenue
-$675
Total assets, end of year
$6,691,676
Total liabilities, end of year
$383,996
Net assets or fund balances, end of year
$6,307,680
Program services expenses (Part IX)
$4,662,138
Management and general expenses
$4,211
Fundraising expenses
$1,198,058
Program service expenses (Part III)
$4,662,138

Program services were 79.5% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1b · Membership dues

    $44,431

  • 1e · Government grants (contributions)

    $320,000

  • 1f · All other contributions, gifts and grants

    $3,248,785

  • 2a · Program service revenue: SYMPOSIUM

    total $1,546,195 · related or exempt $1,546,195

  • 2b · Program service revenue: DATELINE ADVERTISING

    total $329,000 · unrelated business $329,000

  • 2c · Program service revenue: FEE FOR SERVICE CONTRA

    total $72,074 · related or exempt $72,074

  • 11a · Other revenue: MENTAL HEALTH INITIATI

    total -$675 · excluded -$675

  • 11e · Other revenue, total

    -$675

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $409,994 · program services $409,994

  • 2 · Grants to domestic individuals

    total $441,807 · program services $441,807

  • 5 · Compensation of officers, directors and key employees

    total $333,093 · program services $288,531 · fundraising $44,562

  • 7 · Other salaries and wages

    total $2,018,268 · program services $1,608,000 · fundraising $410,268

  • 8 · Pension plan contributions

    total $78,514 · program services $78,514

  • 9 · Other employee benefits

    total $80,520 · program services $55,814 · fundraising $24,706

  • 10 · Payroll taxes

    total $135,570 · program services $80,840 · fundraising $54,730

  • 11b · Fees: legal

    total $48,566 · program services $48,566

  • 11c · Fees: accounting

    total $86,106 · program services $67,491 · fundraising $18,615

  • 11g · Fees: other

    total $636,800 · program services $485,129 · fundraising $151,671

  • 12 · Advertising and promotion

    total $47,229 · program services $42,310 · fundraising $4,919

  • 13 · Office expenses

    total $376,134 · program services $151,789 · fundraising $224,345

  • 16 · Occupancy

    total $153,602 · program services $85,743 · management and general $4,211 · fundraising $63,648

  • 17 · Travel

    total $754,443 · program services $608,698 · fundraising $145,745

  • 19 · Conferences, conventions and meetings

    total $9,777 · program services $7,028 · fundraising $2,749

  • 23 · Insurance

    total $17,456 · program services $17,456

  • 24a · Other expenses: BOARD EXPENSES

    total $127,760 · program services $127,760

  • 24b · Other expenses: SOFTWARE & SUBSCRIPTION

    total $80,218 · program services $40,786 · fundraising $39,432

  • 24c · Other expenses: MEMBERSHIP DUES

    total $13,982 · program services $2,444 · fundraising $11,538

  • 24d · Other expenses: PROFESSIONAL DEVELOPMEN

    total $7,640 · program services $6,791 · fundraising $849

  • 24e · All other expenses

    total $6,928 · program services $6,647 · fundraising $281

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $1,587,891 · end of year $353,681

  • 2 · Savings and temporary cash investments

    beginning of year $1,132,798 · end of year $1,707

  • 4 · Accounts receivable

    beginning of year $312,041 · end of year $77,515

  • 9 · Prepaid expenses and deferred charges

    beginning of year $31,347 · end of year $13,333

  • 11 · Investments: publicly traded securities

    beginning of year $5,955,076 · end of year $6,245,440

  • 17 · Accounts payable and accrued expenses

    beginning of year $290,497 · end of year -$12,418

  • 19 · Deferred revenue

    beginning of year $1,400,500 · end of year $346,469

  • 25 · Other liabilities

    beginning of year $241,526 · end of year $49,945

  • 27 · Net assets without donor restrictions

    beginning of year $7,086,630 · end of year $6,307,680

Mission and programs · 2022

Mission

HEMOPHILIA FEDERATION OF AMERICA IS A NATIONAL NONPROFIT ORGANIZATION THAT ASSISTS, EDUCATES, AND ADVOCATES FOR THE BLEEDING DISORDERS COMMUNITY.

Activities or mission (Part I)

SEE PART III, LINE 1.

  • HFA RESEARCH - A COMMUNITY CENTERED, COMMUNITY FOCUSED, AND COMMUNITY DRIVEN PROGRAM AIMED AT IMPROVING THE LIVES OF BLEEDING DISORDERS COMMUNITY MEMBERS. RESEARCH TOPICS ARE IDENTIFIED BY THE COMMUNITY POPULATION AND FOCUSED ON PATIENT/COMMUNITY DATA. DATA IS COLLECTED NATIONALLY ONLINE AS WELL AS LOCALLY THROUGH HFA'S 50-PLUS MEMBER ORGANIZATIONS ACROSS THE COUNTRY.

    Expenses $1,245,291 · Grants $387,984 · Revenue $72,074

  • SYMPOSIUM CONFERENCE - A NATIONAL ANNUAL COMMUNITY-CERTIFICATION EDUCATIONAL CONFERNCE EVENT THAT DRAWS HUNDREDS OF PATIENTS AND THEIR FAMILIES.THIS CONFERENCE IS A PLACE WHERE COMMUNITY MEMBERS COME TOGETHER TO SHARE INFORMATION, LEARN ABOUT NEW ADVANCEMENT, AND BUILD A NETWORK OF SUPPORT.

    Expenses $1,171,107 · Grants $57,672 · Revenue $1,546,195

  • HELPING HANDS - DESIGNED TO ESTABLISH A RAPID, NON-INVASIVE SOURCE OF RELIEF FOR EMERGENCY SITUATIONS FOR INDIVIDUALS AND FAMILIES IN THE BLEEDING DISORDERS COMMUNITY. EACH APPLICATION IS GIVEN CAREFUL CONSIDERATION AS TO THE PERSONAL CIRCUMSTANCES, WHILE ENSURING A MINIMUM INVASION OF PRIVACY FOR COMMUNITY MEMBERS. THE PROGRAM ALSO ASSISTS INDIVIDUALS WITH THE COSTS OF MEDICALLY NECESSARY ITEMS AND DURABLE MEDICAL EQUIPMENT.

    Expenses $771,974 · Grants $365,630

  • GEARS FOR GOOD CHARITY BIKE RIDE - ENCOURAGES PEOPLE WITH BLEEDING DISORDERS TO LIVE HEALTHY, ACTIVE LIFESTYLES. GEARS FOR GOOD IS A CHARITY BIKE RIDE OFFERED TO RAISE FUNDS FOR THE HELPING HANDS PROGRAM. RIDERS ENJOY MEETING NEW PEOPLE AND BUILDING STRONGER FRIENDSHIPS ALONG THE WAY WHILE RAISING FUNDS FOR THIS IMPORTANT CAUSE.

    Expenses $397,329 · Grants $22,832

  • OTHER ACTIVITIES - PROVIDES EDUCATIONAL AND ARTISTIC SCHOLARSHIPS TO MEMBERS OF THE BLEEDING DISORDERS COMMUNITY, A RESOURCE GUIDE FOR THE CONSUMERS, AND MAINTAINS A WEBSITE WITH INFORMATION ABOUT THE ORGAIZATION'S PROGRAMS AND SERVICES. THE ORGANIZATION ALSO PUBLISHES A QUARTERLY NEWSLETTER CALLED "DATELINE FEDERATION". IN ADDITION, THE ORGANIZATION COVERS THE COST OF ATTENDANCE TO MEETINGS OF THE DEPARTMENT OF HEALTH AND HUMAN SERVIES, THE BLOOD PRODUCTS ADVISORY COMMITTEE OF THE FDA, AND THE ADVISORY COMMITTEE ON BLOOD SAFETY AND AVAILABILITY, AND PARTICIPATION IN CONFERENCES AT THE INVITATION OF THE CENTER FOR DISEASE CONTROL.

    Expenses $557,730 · Grants $17,683

  • OUTREACH - HELPS INDIVIDUALS WITH BLEEDING DISORDERS AND THEIR CAREGIVERS LEARN HOW TO BECOME ADVOCATES ON THIER OWN BEHALF THROUGH IN-PERSON AND ONLINE TRAINING, TOOL KITS, AND WEV RESOURCES. EDUCATION AND TOOLS ARE PROVIDED TO PARTICIPATE IN MONITORING, LEARNING TO SELF-ADVOCATE, AND EDUCATING ABOUT FEDERAL AND STATE PUBLIC POLICIES THAT IMPACT THE LIVES OF PEOPLE LIVING WITH BLEEDIDNG DISORDERS. SOCIAL AND PRINT MEDIA ARE ACTIVELY UTILIZED TO EXTEND OUTREACH EFFORTS AND BRING COMMUNITY TOGETHER. FOUR PROGRAMS ARE INCLUDED IN OUTREACH: BLOOD BROTHERHOOD, BLOOD SISTERHOOD, HFA FAMILIES,AND OUTREACH EDUCATION

    Expenses $518,707

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • ALLIE RITCEY

    CHAIR

    Total calculated
    $0
    Hours/week
    1

  • JOSEPH MARKOWITZ

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    1

  • TRACY CLEGHORN

    PAST CHAIR

    Total calculated
    $0
    Hours/week
    1

  • LUCAS RUNION

    TREASURER

    Total calculated
    $0
    Hours/week
    1

  • GEORGE STONE

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • STEPHEN LONG

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    1

  • DAVID HUSKIE

    MEMBER AT LARGE

    Total calculated
    $0
    Hours/week
    1

  • VICTORIA HUBBERT

    MEMBER AT LARGE

    Total calculated
    $0
    Hours/week
    1

  • DANIEL MIKKOLA

    MEMBER AT LARGE

    Total calculated
    $0
    Hours/week
    1

  • MARIA CHAVEZ

    MEMBER AT LARGE

    Total calculated
    $0
    Hours/week
    1

  • ANNE-LOUISE WIRTHLIN

    MEMBER AT LARGE

    Total calculated
    $0
    Hours/week
    1

  • MICHELLE PALMATIER

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • LEIGH GOLDSTEIN

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • MONICA DIAZ MATTEI

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • STEPHANIE KRAMBRINK

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • DEBRA SCHWARTZ

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • CARSON OUELLETTE

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • PATRICIA TUCKER

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • CHERI WAKEHAM

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • ALANE FOLEY

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • JOURDAN WATKINS

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • BERNADETTE FOX

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • KIM MADEIROS

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • NIKOLE SCHROEDER

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • DANIELLE LEITNER BAXTER

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • MATTHEW PORGES

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • TYSHAWN CONSTANTINE

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • AUSTIN HOLLAND

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • NATASHA BURROUGHS

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • SHARI LUCKEY

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • KRISTINE MANNS

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • RONALD STAAKE

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • KASEY SHADE

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • CHARLENE COWELL

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • JESUS ESCOBEDO-SOTO

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • LAURA PORTALES

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • ASHLEY CASTELLO

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • ANGELA BROWN

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • BRITNEE VIEIRA

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • JEREMY GRIFFIN

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • TANYA RICCHI

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • CARLA WELLS

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • KATHERINE MEARS

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • ESTEFANA MONGE-SOTELO

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • DENA SHEPARD

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • TAHA AMIR

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • CARLETHA GATES

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • SCOTT DOMOWICZ

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • SHARON MEYERS

    PRESIDENT & CEO (UNTIL 5/31)

    Total calculated
    $234,810
    From this org
    $222,810
    From related orgs
    $0
    Other
    $12,000
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $66,666
    Bonus
    $156,144
    Other
    $0
    Deferred
    $12,000
    Nontaxable benefits
    $0
    Filer's total
    $234,810

  • BARBARA KAVANAUGH

    INTERIM CEO

    Total calculated
    $98,283
    From this org
    $98,013
    From related orgs
    $0
    Other
    $270
    Hours/week
    40

  • MICHELLE BURG

    VP OPERATIONS (UNTIL 11/3)

    Total calculated
    $118,905
    From this org
    $110,097
    From related orgs
    $0
    Other
    $8,808
    Hours/week
    40

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Answered yes

  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee
  • 4a · Severance or change-of-control payment

Answered no

  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

PART I, LINE 4A
SHARON MEYERS RECEIVED $156,144.31 SEVERANCE PACKAGE.

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

  • HEMOPHILIA FOUNDATION OF MARYLAND

    $18,000

    BUDGETING, YES YOU CAN (PART 2 OF 3),EVERYTHING CREDIT (PART 3 O 3) DEBRA JACOBS - EVENT 9/28/2022,FINANCIAL WELLNESS 101 (DEBRA JACOBS) PART 1/3,GAME OF LIFE 11/12/2022,INTENTIONAL TEAM BUILDING 11/12/2022,JOINT HEALTH WEBINAR - VIRTUAL,RAP SESSION - EVENT 5/21/2022,RAP SESSION - EVENT 5/21/2022,TEEN FITNESS 12/17/2022,WINTER HOLIDAY RAP SESSION 12/10/2022

  • MIDWEST HEMOPHILIA ASSOCIATION V

    $16,000

    12/13/22, FAMILES,4 SESSIONS: KINESIO TAPING, ADAPTING PHYSICAL ACTIVITIES FOR JOINT HEALTH, AND A PATHWAY FOR BEST CARE; THE REPRODUCTIVE YEARS,KINESIO TAPING,MENTAL HEALTH 101 - EVENT 5/14/2022,ON THE HORIZON/EMERGING THERAPIES,RAP SESSION: HEALTH & WELLNESS.

  • WESTERN PA BLEEDING DISORDERS FOUNDATION

    $16,000

    A PATHWAY FOR BEST CARE: THE REPRODUCTIVE YEARS - EVENT 5/14/2022,ADAPTING PHYSICAL ACTIVITIES FOR JOINT HEALTH,COOKING WITH CHEF MIKE - EVENT 1/8/2022,GOT STRESS SERIES - VIRTUAL EVENT OVER 3 WEEKS,RAP SESSION: CAREGIVERS - EVENT 5/14/2022,TASK MASTER & WHAT'S IN A CLOWNS DR. BAG

  • HEMOPHILIA FND OF SOUTHERN CALIFORNIA

    $16,000

    BASICS OF SCHOOL ADVOCACY AND GOT STRESS? STRATEGIES FOR ANXIETY AND WORRY PRESENTED BY DR. JULIANA BLOOM,, PHD, BSIS RAP SESSION - ENGLISH - EVENT 3/19/2022, BSIS RAP SESSION - EVENT 3/19/2022,CARRIER GUILT & BALANCING FAMILY ISSUES,FINANCIAL WELLNESS 101, FACILITATED BY DEBRA JACOBS - EVENT 7/13/2022,MILD MATTERS, PRESENTED BY REBEKAH HECKATHORNE, RN

  • VIRGINIA HEMOPHILIA FOUNDATION (V)

    $16,000

    A PATHWAY FOR BEST CARE,ADAPTING PHYSICAL ACTIVITIES FOR JOINT HEALTH - EVENT 8/13/2022,AGES AND STAGE; EARLY CHILDHOOD,MIND-BODY-HEART CONNECTION,MY STORY OR RESILIENCE & EMERGING THERAPIES,RAP SESSION,TRAUMA AND PTSD IN THE BLEEDING DISORDERS COMMUNITY.

  • LOUISIANA HEMOPHILIA FOUNDATION

    $16,000

    2 SESSIONS - MENTAL HEALTH 101 FOR TEENS & MY STORY OF RESILIENCE - EVENT 7/25/2022,2 SESSIONS: INTIMACY (COUPLES) AND RAP SESSION (INTIMACY),BLOOD SISTERHOOD PROGRAM OVERVIEW,IMPORTANCE OF COMMUNITY,IMPROV FOR TEENS CONNECTIONS & MENTAAL HEALTH, REAL TALK,

  • HEMOPHILIA OF IOWA (V)

    $14,000

    HITTING A HOME RUN AT YOUR CLINIC VISIT, BLOOD BROTHERHOOD RAP SESSION,TWO PRESENTATIONS: FINANCIAL WELLNESS 101 (DEBRA JACOBS) & PATHWAYS TO CARE IN THE REPRODUCTIVE YEARS (DR. O'BRIEN),WHEN TO FREAK OUT OR CALMLY PICK UP THE PHONE

  • HEMOPHILIA FND OF MICHIGAN

    $14,000

    3-H PROCESSING THE CONTINUED IMPACT, AGING WITH A BLEEDING DISORDER, BARRIERS TO WOMEN/X LINKED DISORDERS,COOKING WITH CHEF MIKE - BSIS,FINANCIAL WELLNESS 101 - DEBRA JACOBS

  • TENNESSEE HEMOPHILIA AND BLEEDING DISORDERS FOUNDATION

    $14,000

    2 SESSIONS - BLOOD SISTERHOOD OVERVIEW & RAP SESSION (BLOOD SISTERS) - EVENT 8/6/2022,2 SESSIONS: GOT STRESS, PARTS 1 & 2,2 SESSIONS; MENTAL HEALTH 101 AND KINESIO TAPING,RAP SESSION FOR BLOOD BROTHERHOOD; ANXIETY, DEPRESSION AND COPING.

  • NEW ENGLAND HEMOPHILIA ASSOCIATION (V)

    $14,000

    A PATHWAY FOR BEST CARE, THE REPRODUCTIVE YEARS - EVENT 8/27/2022,AGING WITH A BLEEDING DISORDER,INTIMACY AND FOCUSED RAP SESSION (2 SESSIONS BY THE SAME SPEAKER) - EVENT 3/19/2022,MANAGING PAIN ALTERNATIVELY,RAP SESSION,TAKING CARE OF YOU

The 10 largest by cash amount. The API serves every itemized grant.

Provenance

Return type
form_990
Tax year
2022
Filed
7 November 2023
IRS schema version
2022v5.0
Source object
202313119349304036

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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