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← NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS

Form 990 for tax year 2023

Filed by NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS.

Totals

Total revenue
$1,161,405
Total expenses
$1,079,785
Contributions and grants received
$884,423
Grants paid
$45,033
Program service revenue
$29,121
Investment income
$211,660
Other revenue
$36,201
Total assets, end of year
$4,529,323
Total liabilities, end of year
$156,409
Net assets or fund balances, end of year
$4,372,914
Program services expenses (Part IX)
$960,179
Management and general expenses
$14,950
Fundraising expenses
$104,656
Program service expenses (Part III)
$960,179

Program services were 88.9% 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

    $276,559

  • 1f · All other contributions, gifts and grants

    $607,864

  • 1g · Noncash contributions included above

    $59,225

  • 2a · Program service revenue: NATIONAL AND REGIONAL

    total $29,121 · related or exempt $29,121

  • 3 · Investment income

    total $48,569 · excluded $48,569

  • 7a · Gross sales of assets other than inventory

    securities $163,091

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

    securities $0

  • 7c · Gain or loss

    securities $163,091

  • 7d · Net gain or loss

    total $163,091 · excluded $163,091

  • 8a · Fundraising events: gross income

    $38,504

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

    $276,559

  • 8b · Fundraising events: direct expenses

    $5,182

  • 8c · Net income from fundraising events

    total $33,322 · excluded $33,322

  • 11a · Other revenue: PROMOTIONAL ITEMS

    total $2,879 · excluded $2,879

  • 11e · Other revenue, total

    $2,879

Functional expenses

Part IX, the statement of functional expenses.

  • 2 · Grants to domestic individuals

    total $45,033 · program services $45,033

  • 7 · Other salaries and wages

    total $505,974 · program services $457,611 · management and general $7,195 · fundraising $41,168

  • 8 · Pension plan contributions

    total $9,444 · program services $8,542 · management and general $134 · fundraising $768

  • 9 · Other employee benefits

    total $3,906 · program services $3,532 · management and general $56 · fundraising $318

  • 10 · Payroll taxes

    total $39,740 · program services $35,942 · management and general $565 · fundraising $3,233

  • 11b · Fees: legal

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

  • 11c · Fees: accounting

    total $47,937 · program services $39,308 · management and general $480 · fundraising $8,149

  • 11f · Fees: investment management

    total $10,492 · program services $8,603 · management and general $105 · fundraising $1,784

  • 11g · Fees: other

    total $64,012 · program services $52,489 · management and general $641 · fundraising $10,882

  • 12 · Advertising and promotion

    total $42,204 · program services $35,874 · management and general $844 · fundraising $5,486

  • 13 · Office expenses

    total $28,837 · program services $23,646 · management and general $289 · fundraising $4,902

  • 16 · Occupancy

    total $9,765 · program services $8,030 · management and general $75 · fundraising $1,660

  • 23 · Insurance

    total $9,212 · program services $7,554 · management and general $92 · fundraising $1,566

  • 24a · Other expenses: FAMILY CONFERENCES

    total $124,564 · program services $124,564

  • 24b · Other expenses: ADVOCACY

    total $67,601 · program services $67,601

  • 24c · Other expenses: DEVELOPMENT

    total $42,223 · program services $16,889 · management and general $4,223 · fundraising $21,111

  • 24d · Other expenses: MEMBERSHIPS

    total $12,507 · program services $10,241 · management and general $126 · fundraising $2,140

  • 24e · All other expenses

    total $15,310 · program services $13,880 · management and general $115 · fundraising $1,315

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $772,544 · end of year $520,864

  • 2 · Savings and temporary cash investments

    beginning of year $1 · end of year $547,830

  • 3 · Pledges and grants receivable

    beginning of year $21,575 · end of year $17,187

  • 9 · Prepaid expenses and deferred charges

    beginning of year $23,467 · end of year $9,919

  • 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 $3,060,702 · end of year $3,336,835

  • 14 · Intangible assets

    beginning of year $121,290 · end of year $96,688

  • 17 · Accounts payable and accrued expenses

    beginning of year $63,558 · end of year $46,721

  • 18 · Grants payable

    beginning of year $6,100 · end of year $13,000

  • 25 · Other liabilities

    beginning of year $121,290 · end of year $96,688

  • 27 · Net assets without donor restrictions

    beginning of year $3,655,423 · end of year $4,317,747

  • 28 · Net assets with donor restrictions

    beginning of year $153,208 · end of year $55,167

Mission and programs · 2023

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 - 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 THE 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. THE NFED PROVIDES FINANCIAL ASSISTANCE TO INDIVIDUALS TO ATTEND THE FAMILY CONFERENCE. THE 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 $515,209 · Grants $33,238 · Revenue $29,121

  • TREATMENT - NFED'S PATIENT CARE COUNCIL, COMPRISED OF MEDICAL AND DENTAL EXPERTS, OVERSEES THE NFED'S INITIATIVES TO IMPROVE TREATMENT OF ECTODERMAL DYSPLASIAS. THE NFED TEACHES CARE PROVIDERS HOW TO DIAGNOSE AND TREAT THE RARE DISORDERS THROUGH PROFESSIONAL SYMPOSIA AND GRAND ROUNDS AT UNIVERSITIES. THE 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. THE NFED ALSO HELPS FAMILIES PAY FOR NEEDED CARE THROUGH THE TREATMENT ASSISTANCE PROGRAM AND INSURANCE COACHING

    Expenses $255,851 · Grants $2,491

  • RESEARCH - NFED'S SCIENTIFIC ADVISORY COUNCIL OVERSEES THE NFED'S RESEARCH INITIATIVES, AIMED TO IMPROVE THE HEALTH AND QUALITY OF LIFE OF AFFECTED INDIVIDUALS BY FINDING MANAGEMENT SOLUTIONS AND, EVENTUALLY, FINDING CURES FOR ECTODERMAL DYSPLASIAS. THE NFED ADVANCES RESEARCH THROUGH ADVOCACY AND PARTNERSHIPS WITH ORGANIZATIONS SUCH AS THE NATIONAL INSTITUTE OF HEALTH. THE NFED PROVIDES SEEDS FUNDS TO RESEARCHERS, PROVIDES THEM WITH ACCESS TO AFFECTED INDIVIDUALS, AND SHARES INFORMATION TO LAUNCH LARGER PROJECTS. NFED IS DEVELOPING A WEB-BASED ECTODERMAL DYSPLASIAS INTERNATIONAL REGISTRY TO SERVE AS A REPOSITORY OF GENETIC AND CLINICAL INFORMATION AND FACILITATES COMMUNICATION AMONG SCIENTISTS WHO STRIVE TO ADVANCE RESEARCH ON ECTODERMAL DYSPLASIAS. THE NFED ALSO SPONSORS SCIENTIFIC MEETINGS TO INCREASE UNDERSTANDING OF THE DISORDERS.

    Expenses $189,119 · Grants $9,305

As filed on the 2023 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

  • Charles Richter

    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

  • Mary Fete

    EXECUTIVE DIRECTOR

    Total calculated
    $121,124
    From this org
    $121,124
    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
2023
Filed
30 April 2024
IRS schema version
2023v5.0
Source object
202401279349301590

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

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