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Nonprofiteer
← THE EHLERS-DANLOS SOCIETY

Form 990 for tax year 2022

Filed by THE EHLERS-DANLOS SOCIETY.

Totals

Total revenue
$4,514,528
Total expenses
$4,085,098
Contributions and grants received
$3,933,892
Grants paid
$1,897,426
Program service revenue
$572,083
Investment income
$0
Other revenue
$8,553
Total assets, end of year
$3,182,723
Total liabilities, end of year
$540,911
Net assets or fund balances, end of year
$2,641,812
Program services expenses (Part IX)
$3,314,208
Management and general expenses
$427,507
Fundraising expenses
$343,383
Program service expenses (Part III)
$3,314,208

Program services were 81.1% 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.

  • 1f · All other contributions, gifts and grants

    $3,933,892

  • 2a · Program service revenue: CONFERENCE

    total $572,083 · related or exempt $572,083

  • 10a · Gross sales of inventory

    $19,696

  • 10b · Cost of goods sold

    $11,143

  • 10c · Net income from sales of inventory

    total $8,553 · unrelated business $8,553

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $1,371,689 · program services $1,371,689

  • 2 · Grants to domestic individuals

    total $15,737 · program services $15,737

  • 3 · Grants to foreign organizations and individuals

    total $510,000 · program services $510,000

  • 5 · Compensation of officers, directors and key employees

    total $228,753 · program services $115,039 · management and general $47,826 · fundraising $65,888

  • 7 · Other salaries and wages

    total $724,877 · program services $345,880 · management and general $153,784 · fundraising $225,213

  • 9 · Other employee benefits

    total $13,475 · program services $3,085 · management and general $5,434 · fundraising $4,956

  • 10 · Payroll taxes

    total $85,782 · program services $53,260 · management and general $17,214 · fundraising $15,308

  • 11a · Fees: management

    total $111,839 · program services $111,839

  • 11b · Fees: legal

    total $28,976 · management and general $28,976

  • 11c · Fees: accounting

    total $23,425 · management and general $23,425

  • 11g · Fees: other

    total $142,114 · program services $132,741 · management and general $4,030 · fundraising $5,343

  • 12 · Advertising and promotion

    total $6,570 · program services $6,570

  • 13 · Office expenses

    total $64,272 · program services $32,345 · management and general $22,766 · fundraising $9,161

  • 14 · Information technology

    total $44,103 · program services $3,403 · management and general $28,058 · fundraising $12,642

  • 16 · Occupancy

    total $2,153 · management and general $2,153

  • 17 · Travel

    total $215,718 · program services $215,718

  • 19 · Conferences, conventions and meetings

    total $395,365 · program services $395,365

  • 22 · Depreciation, depletion and amortization

    total $10,042 · management and general $10,042

  • 23 · Insurance

    total $9,338 · management and general $9,338

  • 24a · Other expenses: MISCELLANEOUS EXPENSES

    total $74,461 · management and general $74,461

  • 24b · Other expenses: FUNDRAISING EXPENSES

    total $4,872 · fundraising $4,872

  • 24c · Other expenses: DUES & SUBSCRIPTIONS

    total $1,537 · program services $1,537

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $1,891,649 · end of year $2,392,120

  • 3 · Pledges and grants receivable

    beginning of year $202,087 · end of year $272,325

  • 4 · Accounts receivable

    beginning of year $624,490 · end of year $379,862

  • 9 · Prepaid expenses and deferred charges

    beginning of year $87,894 · end of year $96,116

  • 10a · Land, buildings and equipment: cost or other basis

    $1,663

  • 10b · Land, buildings and equipment: accumulated depreciation

    $1,616

  • 10c · Land, buildings and equipment, net

    beginning of year $601 · end of year $47

  • 11 · Investments: publicly traded securities

    beginning of year $2,094 · end of year $1,730

  • 14 · Intangible assets

    beginning of year $11,052 · end of year $40,523

  • 17 · Accounts payable and accrued expenses

    beginning of year $298,322 · end of year $333,003

  • 18 · Grants payable

    beginning of year $272,325 · end of year $185,941

  • 19 · Deferred revenue

    beginning of year $41,474 · end of year $21,967

  • 27 · Net assets without donor restrictions

    beginning of year $141,219 · end of year $595,865

  • 28 · Net assets with donor restrictions

    beginning of year $2,066,527 · end of year $2,045,947

Mission and programs · 2022

Mission

THE EHLERS-DANLOS SOCIETY IS A GLOBAL COMMUNITY OF INDIVIDUALS, CAREGIVERS, HEALTHCARE PROFESSIONALS, AND SUPPORTERS, DEDICATED TO SAVING AND IMPROVING THE LIVES OF THOSE AFFECTED BY THE EHLERS-DANLOS SYNDROMES (EDS), HYPERMOBILITY SPECTRUM DISORDERS (HSD), AND RELATED CONDITIONS.WE PROVIDE GLOBAL LEARNING CONFERENCES, COLLABORATIVE RESEARCH, EDUCATION INITIATIVES, AWARENESS CAMPAIGNS, ADVOCACY, COMMUNITY-BUILDING, AND CARE FOR THE EDS AND HSD POPULATION.

Activities or mission (Part I)

THE EHLERS-DANLOS SOCIETY IS DEDICATED TO ADVANCING AND ACCELERATING RESEARCH AND EDUCATION IN EHLERS-DANLOS SYNDROMES (EDS) AND HYPERMOBILITY SPECTRUM DISORDERS (HSD). WE SUPPORT THE DEVELOPMENT OF EFFECTIVE AND EQUITABLE EDS AND HSD THERAPIES AND WORK COLLABORATIVELY TO IMPROVE THE LIVES OF INDIVIDUALS AFFECTED BY EDS AND HSD.WE PROVIDE GLOBAL LEARNING CONFERENCES, COLLABORATIVE RESEARCH, EDUCATION INITIATIVES, AWARENESS CAMPAIGNS, ADVOCACY, COMMUNITY-BUILDING, AND CARE FOR THE EDS AND HSD POPULATION.

  • BRINGING TOGETHER MEDICAL PROFESSIONALS FROM ALL OVER THE WORLD TO WORK ON GROUND-BREAKING MANAGEMENT AND CARE. AT THE CORE OF THIS RESEARCH IS THE GLOBAL EDS AND HSD REGISTRY. THE REGISTRY WILL ALSO PROVIDE NEW OPPORTUNITIES FOR RESEARCH, INCLUDING IDENTIFYING LINKS BETWEEN EDS AND HSD AND OTHER CONDITIONS. THE EHLERS-DANLOS SOCIETY HAS AWARDED FUNDING FOR RESEARCH GRANTS IN TO THE EHLERS-DANLOS SYNDROMES AND HYPERMOBILITY SPECTRUM DISORDERS. OUR GOAL IS TO ENSURE CONSISTENT AND GROUNDBREAKING RESEARCH INTO THESE CONDITIONS TO HELP INDIVIDUALS LIVING WITH THESE CONDITIONS, WORLDWIDE.

    Expenses $778,820 · Grants $778,820

  • THE EHLERS-DANLOS SOCIETY ORGANIZES MEDICAL AND SCIENTIFIC SYMPOSIUMS TO EXAMINE THE LATEST RESEARCH AND UPDATE THE DIAGNOSTIC CRITERIA AND GUIDELINES FOR MANAGEMENT AND CARE. WE WORK WITH THE COMORBIDITY COALITION AND THE INTERNATIONAL CONSORTIUM ON DEVELOPED CLINICAL CARE PATHWAYS FOR MANAGEMENT AND DIAGNOSIS. EVENTS FOR HEALTH PROFESSIONALS ARE HELD GLOBALLY AND ARE CME-ACCREDITED. ANNUAL GLOBAL LEARNING CONFERENCES BRING TOGETHER AND UNITE OUR COMMUNITY, PROVIDING OPPORTUNITIES TO INTERACT, FIND SUPPORT, AND LEARN MANAGEMENT STRATEGIES AND INFORMATION FROM WORLD-LEADING EXPERTS IN EDS AND HSD.

    Expenses $589,144 · Revenue $572,083

  • Expenses $1,946,244 · Grants $1,118,606

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

Listed in Part VII

  • Lara Bloom

    CEO

    Total calculated
    $151,230
    From this org
    $0
    From related orgs
    $151,230
    Other
    $0
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $0 + $142,429 related
    Bonus
    $0 + $5,967 related
    Other
    $0 + $2,834 related
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $0 + $151,230 related

  • Elizabeth Herndon

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Melanie MacLeod

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Edward Fitzgerald III

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Woodrow Gandy

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Susan Haskel

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Amy Rochlin

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Mitul Modi

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Michelle Jalali

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Clair Francomano

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Susan Hawkins

    PRESIDENT

    Total calculated
    $0
    Hours/week
    5

  • John Zonarich

    SECRETARY

    Total calculated
    $0
    Hours/week
    5

  • Robert Rubin

    TREASURER

    Total calculated
    $0
    Hours/week
    5

  • Eric Alley

    FINANCE DIRECTOR

    Total calculated
    $77,523
    From this org
    $77,523
    From related orgs
    $0
    Other
    $0
    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 · 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

The filer's explanations (Part III)

PART I, LINE 3
LARA BLOOM'S COMPENSATION IS ESTABLISHED BY APPROVAL FROM THE BOARD OF DIRECTORS.

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

Related organizations on this return

Schedule R Part II: tax-exempt organizations related to the filer by control. It does not record shared board members or money.

  • THE EHLERS-DANLOS SOCIETY UK

    PROVIDING INTERNATIONAL SUPPORT · UK

Provenance

Return type
form_990
Tax year
2022
Filed
5 June 2023
IRS schema version
2022v5.0
Source object
202301569349301465

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