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← HEMOPHILIA FEDERATION OF AMERICA INC

Form 990 for tax year 2023

Filed by HEMOPHILIA FEDERATION OF AMERICA INC.

Totals

Total revenue
$5,110,030
Total expenses
$5,927,594
Contributions and grants received
$3,475,569
Grants paid
$584,974
Program service revenue
$1,441,945
Investment income
$192,173
Other revenue
$343
Total assets, end of year
$7,762,326
Total liabilities, end of year
$1,998,763
Net assets or fund balances, end of year
$5,763,563
Program services expenses (Part IX)
$4,097,203
Management and general expenses
$1,370,959
Fundraising expenses
$459,432
Program service expenses (Part III)
$4,097,203

Program services were 69.1% 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.

  • 1a · Federated campaigns

    $211

  • 1b · Membership dues

    $25,612

  • 1e · Government grants (contributions)

    $223,714

  • 1f · All other contributions, gifts and grants

    $3,226,032

  • 2a · Program service revenue: SYMPOSIUM

    total $1,184,779 · related or exempt $1,184,779

  • 2b · Program service revenue: PROGRAM SERVICE FEES

    total $132,666 · related or exempt $132,666

  • 2c · Program service revenue: DATELINE ADVERTISING

    total $124,500 · unrelated business $124,500

  • 3 · Investment income

    total $192,173 · excluded $192,173

  • 11a · Other revenue: MISCELLANEOUS

    total $343 · excluded $343

  • 11e · Other revenue, total

    $343

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $400,190 · program services $400,190

  • 2 · Grants to domestic individuals

    total $184,784 · program services $184,784

  • 5 · Compensation of officers, directors and key employees

    total $228,026 · program services $45,605 · management and general $136,816 · fundraising $45,605

  • 7 · Other salaries and wages

    total $1,951,825 · program services $1,598,608 · management and general $225,781 · fundraising $127,436

  • 8 · Pension plan contributions

    total $29,245 · program services $25,154 · management and general $2,081 · fundraising $2,010

  • 9 · Other employee benefits

    total $89,468 · program services $80,175 · management and general $5,491 · fundraising $3,802

  • 10 · Payroll taxes

    total $182,925 · program services $125,508 · management and general $44,451 · fundraising $12,966

  • 11b · Fees: legal

    total $27,438 · program services $10,595 · management and general $16,593 · fundraising $250

  • 11c · Fees: accounting

    total $134,541 · program services $1,013 · management and general $133,528

  • 11f · Fees: investment management

    total $32,978 · management and general $32,978

  • 11g · Fees: other

    total $765,610 · program services $355,528 · management and general $365,589 · fundraising $44,493

  • 12 · Advertising and promotion

    total $106,815 · program services $72,034 · management and general $840 · fundraising $33,941

  • 13 · Office expenses

    total $289,322 · program services $163,986 · management and general $22,376 · fundraising $102,960

  • 14 · Information technology

    total $31,550 · program services $5,830 · management and general $25,720

  • 17 · Travel

    total $610,947 · program services $490,811 · management and general $56,465 · fundraising $63,671

  • 19 · Conferences, conventions and meetings

    total $376,540 · program services $354,985 · management and general $18,834 · fundraising $2,721

  • 22 · Depreciation, depletion and amortization

    total $120,462 · management and general $120,462

  • 23 · Insurance

    total $7,146 · program services $1,112 · management and general $6,034

  • 24a · Other expenses: UBI TAXES

    total $71,369 · program services $80,295 · management and general -$8,926

  • 24b · Other expenses: BAD DEBT EXPENSE

    total $117,714 · management and general $117,714

  • 24c · Other expenses: SUBSCRIPTIONS

    total $107,262 · program services $88,274 · management and general $7,234 · fundraising $11,754

  • 24d · Other expenses: MISCELLANEOUS

    total $23,084 · program services $3,637 · management and general $19,447

  • 24e · All other expenses

    total $38,353 · program services $9,079 · management and general $21,451 · fundraising $7,823

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $353,681 · end of year $209,891

  • 2 · Savings and temporary cash investments

    beginning of year $1,707 · end of year $957,501

  • 3 · Pledges and grants receivable

    beginning of year $0 · end of year $210,000

  • 4 · Accounts receivable

    beginning of year $77,515 · end of year $9,409

  • 9 · Prepaid expenses and deferred charges

    beginning of year $13,333 · end of year $31,049

  • 11 · Investments: publicly traded securities

    beginning of year $6,245,440 · end of year $5,721,177

  • 15 · Other assets

    beginning of year $0 · end of year $623,299

  • 17 · Accounts payable and accrued expenses

    beginning of year -$12,418 · end of year $347,827

  • 19 · Deferred revenue

    beginning of year $346,469 · end of year $0

  • 25 · Other liabilities

    beginning of year $49,945 · end of year $1,650,936

  • 27 · Net assets without donor restrictions

    beginning of year $6,307,680 · end of year $5,763,563

Mission and programs · 2023

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.

  • SYMPOSIUM CONFERENCE - A NATIONAL ANNUAL COMMUNITY-CERTIFICATION EDUCATIONAL CONFERENCE 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 $1,332,871 · Revenue $1,184,779

  • 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 $1,108,086 · Grants $402,523 · Revenue $132,666

  • OUTREACH - HELPS INDIVIDUALS WITH BLEEDING DISORDERS AND THEIR CAREGIVERS LEARN HOW TO BECOME ADVOCATES ON THEIR OWN BEHALF THROUGH IN-PERSON AND ONLINE TRAINING, TOOL KITS, AND WEB 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 $653,915

  • 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 $465,875 · Grants $169,451

  • 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 ORGANIZATION'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 SERVICES, 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 $312,742 · Revenue $124,500

  • 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 $223,714 · Grants $13,000

As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • LUCAS RUNION

    CHAIR

    Total calculated
    $0
    Hours/week
    1

  • JOSEPH MARKOWITZ

    VICE-CHAIR

    Total calculated
    $0
    Hours/week
    1

  • ANNE-LOUISE WIRTHLIN

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • GEORGE STONE

    TREASURER - UNTIL 11/2023

    Total calculated
    $0
    Hours/week
    1

  • THOMAS WALLACE

    TREASURER - AS OF 11/2023

    Total calculated
    $0
    Hours/week
    1

  • LYNNE CAPRETTO

    DIRECTOR AND MOAC LIAISON

    Total calculated
    $0
    Hours/week
    1

  • MARIA CHAVEZ

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • DAVID HUSKIE

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • RENITA JOHNSON

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • DIANE LIMA

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • DANIEL MIKKOLA

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • DANIEL KELSEY

    PRESIDENT AND CEO - AS OF 04/2023

    Total calculated
    $158,102
    From this org
    $140,373
    From related orgs
    $0
    Other
    $17,729
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $140,373
    Bonus
    $0
    Other
    $0
    Deferred
    $8,375
    Nontaxable benefits
    $9,354
    Filer's total
    $158,102

  • BARBRA KAVANAUGH

    INTERIM CEO - UNTIL 04/2023

    Total calculated
    $69,924
    From this org
    $69,924
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

  • TRACY CLEGHORN

    PAST CHAIR

    Total calculated
    $0
    Hours/week
    1

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

Answered no

  • 4a · Severance or change-of-control payment
  • 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

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

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

Provenance

Return type
form_990
Tax year
2023
Filed
1 November 2024
IRS schema version
2023v5.1
Source object
202433069349300828

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