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← NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS

Form 990 for tax year 2022

Filed by NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS.

Totals

Total revenue
$1,493,211
Total expenses
$1,083,870
Contributions and grants received
$1,170,684
Grants paid
$25,103
Program service revenue
$24,687
Investment income
$254,390
Other revenue
$43,450
Total assets, end of year
$3,999,579
Total liabilities, end of year
$190,948
Net assets or fund balances, end of year
$3,808,631
Program services expenses (Part IX)
$902,689
Management and general expenses
$14,172
Fundraising expenses
$167,009
Program service expenses (Part III)
$902,689

Program services were 83.3% 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.

  • 1c · Fundraising events

    $293,896

  • 1f · All other contributions, gifts and grants

    $876,788

  • 1g · Noncash contributions included above

    $114,300

  • 2a · Program service revenue: NATIONAL FAMILY CONFER

    total $24,687 · related or exempt $24,687

  • 3 · Investment income

    total $36,066 · excluded $36,066

  • 7a · Gross sales of assets other than inventory

    securities $218,324

  • 7b · Less cost or other basis and sales expenses

    securities $0

  • 7c · Gain or loss

    securities $218,324

  • 7d · Net gain or loss

    total $218,324 · excluded $218,324

  • 8a · Fundraising events: gross income

    $61,437

  • 8a · Fundraising events: contributions included on line 1c

    $293,896

  • 8b · Fundraising events: direct expenses

    $21,773

  • 8c · Net income from fundraising events

    total $39,664 · excluded $39,664

  • 11a · Other revenue: PROMOTIONAL ITEMS

    total $3,786 · excluded $3,786

  • 11e · Other revenue, total

    $3,786

Functional expenses

Part IX, the statement of functional expenses.

  • 2 · Grants to domestic individuals

    total $25,103 · program services $25,103

  • 7 · Other salaries and wages

    total $583,754 · program services $472,444 · management and general $6,815 · fundraising $104,495

  • 8 · Pension plan contributions

    total $11,831 · program services $9,575 · management and general $138 · fundraising $2,118

  • 9 · Other employee benefits

    total $967 · program services $783 · management and general $11 · fundraising $173

  • 10 · Payroll taxes

    total $44,464 · program services $35,986 · management and general $519 · fundraising $7,959

  • 11b · Fees: legal

    total $1,024 · program services $840 · management and general $10 · fundraising $174

  • 11c · Fees: accounting

    total $48,416 · program services $39,701 · management and general $484 · fundraising $8,231

  • 11f · Fees: investment management

    total $2,584 · program services $2,119 · management and general $26 · fundraising $439

  • 11g · Fees: other

    total $41,698 · program services $34,193 · management and general $417 · fundraising $7,088

  • 12 · Advertising and promotion

    total $47,861 · program services $40,681 · management and general $957 · fundraising $6,223

  • 13 · Office expenses

    total $12,063 · program services $9,892 · management and general $121 · fundraising $2,050

  • 16 · Occupancy

    total $10,985 · program services $9,008 · management and general $110 · fundraising $1,867

  • 22 · Depreciation, depletion and amortization

    total $23,665 · program services $17,275 · management and general $1,657 · fundraising $4,733

  • 23 · Insurance

    total $6,104 · program services $5,006 · management and general $61 · fundraising $1,037

  • 24a · Other expenses: FAMILY CONFERENCES

    total $86,888 · program services $86,888

  • 24b · Other expenses: ADVOCACY

    total $42,425 · program services $42,425

  • 24c · Other expenses: MEMBERSHIPS

    total $41,046 · program services $33,657 · management and general $410 · fundraising $6,979

  • 24d · Other expenses: DEVELOPMENT

    total $23,307 · program services $9,324 · management and general $2,331 · fundraising $11,652

  • 24e · All other expenses

    total $29,685 · program services $27,789 · management and general $105 · fundraising $1,791

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $609,178 · end of year $772,544

  • 2 · Savings and temporary cash investments

    beginning of year $125,505 · end of year $1

  • 3 · Pledges and grants receivable

    beginning of year $25,963 · end of year $21,575

  • 4 · Accounts receivable

    beginning of year $45,724 · end of year $0

  • 9 · Prepaid expenses and deferred charges

    beginning of year $8,123 · end of year $23,467

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

    $41,323

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

    $41,323

  • 10c · Land, buildings and equipment, net

    beginning of year $0 · end of year $0

  • 11 · Investments: publicly traded securities

    beginning of year $3,525,150 · end of year $3,060,702

  • 14 · Intangible assets

    end of year $121,290

  • 17 · Accounts payable and accrued expenses

    beginning of year $49,589 · end of year $63,558

  • 18 · Grants payable

    beginning of year $9,177 · end of year $6,100

  • 25 · Other liabilities

    beginning of year $0 · end of year $121,290

  • 27 · Net assets without donor restrictions

    beginning of year $4,223,557 · end of year $3,655,423

  • 28 · Net assets with donor restrictions

    beginning of year $57,320 · end of year $153,208

Mission and programs · 2022

Mission

TO EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS THROUGH EDUCATION, SUPPORT, AND RESEARCH.

Activities or mission (Part I)

EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS VIA EDUCATION, SUPPORT, & RESEARCH.

  • SUPPORT - THE FAMILY SUPPORT TEAMS, COMPRISED OF FAMILY MEMBERS AND AFFECTED INDIVIDUALS, OVERSEES NFED'S SUPPORT PROGRAMS THAT SEEK TO EMPOWER AND CONNECT INDIVIDUALS AFFECTED BY ECTODERMAL DYSPLASIAS AND THEIR FAMILIES. NFED PUBLISHES HIGH QUALITY INFORMATION TO PROVIDE FAMILIES WITH KNOWLEDGE THAT WILL INCREASE THEIR QUALITY OF LIFE. INFORMATION IS SHARED THROUGH THE FIRST CONNECT PROGRAM, A WEB SITE, MEDICAL/DENTAL GUIDE SERIES, AND CONFERENCES. THE NATIONAL FAMILY CONFERENCE IS NFED'S HALLMARK PROGRAM BRINGING ENTIRE FAMILIES TOGETHER TO LEARN, SHARE AND NETWORK WITH ONE ANOTHER AND WITH EXPERT CARE PROVIDERS. AFFECTED CHILDREN AND THEIR SIBLINGS ATTEND KIDS CAMP AT THE CONFERENCES WHERE THEY PARTICIPATE IN EDUCATIONAL AND SOCIAL ACTIVITIES WITH OTHER CHILDREN LIKE THEM TO DEVELOP SELF ESTEEM. NFED PROVIDES FINANCIAL ASSISTANCE TO INDIVIDUALS TO ATTEND THE FAMILY CONFERENCE. NFED'S FAMILY TO FAMILY NETWORK CONNECTS FAMILIES WITH A CARING LIAISON IN THEIR REGION WHO CAN PROVIDE MORAL SUPPORT, INFORMATION AND PRACTICAL ADVICE, GUIDANCE AND RESOURCES.

    Expenses $463,508 · Grants $16,694 · Revenue $24,687

  • TREATMENT - THE PATIENT CARE COUNCIL, COMPRISED OF MEDICAL AND DENTAL EXPERTS, OVERSEES THE NFED'S INITIATIVES TO IMPROVE TREATMENT OF ECTODERMAL DYSPLASIAS. NFED TEACHES CARE PROVIDERS HOW TO DIAGNOSE AND TREAT THE RARE DISORDERS THROUGH PROFESSIONAL SYMPOSIA AND GRAND ROUNDS AT UNIVERSITIES. NFED ADVOCATES FOR IMPROVING ACCESS TO CARE WITH SPONSORING LEGISLATION TO COVER CONGENITAL ANOMALIES, AND COLLABORATING WITH UNIVERSITIES, GOVERNMENT, PATIENT HEALTH ORGANIZATIONS. AFFECTED INDIVIDUALS CAN RECEIVE MORE AFFORDABLE CARE FROM EXPERIENCED TEAMS OF DENTISTS IN TREATMENT OF ECTODERMAL DYSPLASIAS AT NFED DENTAL TREATMENT CENTERS IN THE U.S. NFED ALSO HELPS FAMILIES PAY FOR NEEDED CARE THROUGH THE TREATMENT ASSISTANCE PROGRAM AND INSURANCE COACHING.

    Expenses $251,127 · Grants $8,409

  • RESEARCH - THE SCIENTIFIC ADVISORY COUNCIL OVERSEES NFED'S RESEARCH INITIATIVES, AIMED TO IMPROVE THE HEALTH AND QUALITY OF LIFE OF AFFECTED INDIVIDUALS BY FINDING SOLUTIONS AND, EVENTUALLY, FINDING CURES FOR ECTODERMAL DYSPLASIAS. NFED ADVANCES RESEARCH THROUGH ADVOCACY AND PARTNERSHIPS WITH ORGANIZATIONS SUCH AS THE NATIONAL INSTITUTES OF HEALTH. NFED PROVIDES SEED FUNDS TO RESEARCHERS, PROVIDES THEM WITH ACCESS TO AFFECTED INDIVIDUALS, AND SHARES INFORMATION TO LAUNCH LARGER PROJECTS. THE ECTODERMAL DYSPLASIAS INTERNATIONAL REGISTRY SERVES AS A REPOSITORY OF CLINICAL INFORMATION AND FACILITATES COMMUNICATION AMONG AFFECTED INDIVIDUALS, CLINICIANS INVOLVED IN THEIR TREATMENT AND SCIENTISTS WHO STRIVE TO ADVANCE RESEARCH ON ECTODERMAL DYSPLASIAS. NFED ALSO SPONSORS RESEARCH CONFERENCES.

    Expenses $188,054

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

Listed in Part VII

  • Karl Nelsen

    PRESIDENT

    Total calculated
    $0
    Hours/week
    5

  • George Barbar

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Keith Throm

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • Richard Stratz

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Krista Basile

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Roy Moffitt

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Marianne Vermeer

    TREASURER

    Total calculated
    $0
    Hours/week
    1

  • J Timothy Wright DDS Ms

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Anil Vora

    VICE PRESIDENT

    Total calculated
    $0
    Hours/week
    10

  • Ruth Geismar

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Jack Kriz

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Timothy Mickelson

    DIRECTOR OF DEVELOPMENT

    Total calculated
    $113,461
    From this org
    $113,461
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

  • Mary Fete

    EXECUTIVE DIRECTOR

    Total calculated
    $118,124
    From this org
    $118,124
    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.

Grants on this return

No itemized grants to organizations on this return.

Provenance

Return type
form_990
Tax year
2022
Filed
18 May 2023
IRS schema version
2022v5.0
Source object
202311429349300661

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