National Foundation For Ectodermal Dysplasias
- Assets
- $4.0m
- Revenue
- $1.5m
- Investments
- $0.0
- Employees
- 8
- Location
- Fairview Heights, IL
- Founding
- 06/1983
- Data as of
- 12/2022
- EIN
- 37-1112496
Organization Overview
National Foundation For Ectodermal Dysplasias is located in Fairview Heights, IL. The organization was established in 1983. As of 12/2022, National Foundation For Ectodermal Dysplasias employed 8 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. National Foundation For Ectodermal Dysplasias is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2022, National Foundation For Ectodermal Dysplasias generated $1.5m in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 8.7% each year. All expenses for the organization totaled $1.1m during the year ending 12/2022. While expenses have increased by 5.7% per year over the past 7 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS VIA EDUCATION, SUPPORT, & RESEARCH.
Describe the Organization's Program Activity:
Part 3 - Line 4a
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.
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.
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.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Karl Nelsen President | OfficerTrustee | 5 | $0 |
George Barbar Director | Trustee | 1 | $0 |
Keith Throm Secretary | OfficerTrustee | 1 | $0 |
Richard Stratz Director | Trustee | 1 | $0 |
Krista Basile Director | Trustee | 1 | $0 |
Roy Moffitt Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $293,896 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $876,788 |
| Noncash contributions included in lines 1a–1f | $114,300 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,170,684 |
| Total Program Service Revenue | $24,687 |
| Investment income | $36,066 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $218,324 |
| Net Income from Fundraising Events | $39,664 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,493,211 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| Grants and other assistance to domestic individuals. | $25,103 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation of current officers, directors, key employees. | $0 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $583,754 |
| Pension plan accruals and contributions | $11,831 |
| Other employee benefits | $967 |
| Payroll taxes | $44,464 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $1,024 |
| Fees for services: Accounting | $48,416 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $2,584 |
| Fees for services: Other | $41,698 |
| Advertising and promotion | $47,861 |
| Office expenses | $12,063 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $10,985 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $0 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $23,665 |
| Insurance | $6,104 |
| All other expenses | $29,685 |
| Total functional expenses | $1,083,870 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $772,544 |
| Savings and temporary cash investments | $1 |
| Pledges and grants receivable | $21,575 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $23,467 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $3,060,702 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $121,290 |
| Other assets | $0 |
| Total assets | $3,999,579 |
| Accounts payable and accrued expenses | $63,558 |
| Grants payable | $6,100 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $121,290 |
| Total liabilities | $190,948 |
| Net assets without donor restrictions | $3,655,423 |
| Net assets with donor restrictions | $153,208 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $3,999,579 |