The United Leukodystrophy Foundation Inc
- Assets
- $1.5m
- Revenue
- $498.9k
- Investments
- $0.0
- Employees
- 3
- Location
- Dekalb, IL
- Founding
- 05/1983
- Data as of
- 12/2022
- EIN
- 35-1557361
Organization Overview
The United Leukodystrophy Foundation Inc is located in Dekalb, IL. The organization was established in 1983. According to its NTEE Classification (G80) the organization is classified as: Specifically Named Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2022, United Leukodystrophy Foundation Inc employed 3 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. United Leukodystrophy Foundation Inc 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, United Leukodystrophy Foundation Inc generated $498.9k in total revenue. This represents relatively stable growth, over the past 7 years the organization has increased revenue by an average of 2.2% each year. All expenses for the organization totaled $557.8k during the year ending 12/2022. While expenses have increased by 4.4% 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.
Since 2016, United Leukodystrophy Foundation Inc has awarded 15 individual grants totaling $389,012. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
THE UNITED LEUKODYSTROPHY FOUNDATION SERVES INDIVIDUALS AND FAMILIES AFFECTED BY LEUKODYSTROPHY BY EXCHANGING INFORMATION AND PROMOTING PROGRESS ON RESEARCH, TREATMENT AND PREVENTION.
Describe the Organization's Program Activity:
Part 3 - Line 4a
THE UNITED LEUKODYSTROPHY FOUNDATION ULF IS A NONPROFIT 501C3 ORGANIZATION FOUNDED IN 1982 THAT SERVES PATIENTS, FAMILIES AND MEDICAL PROFESSIONALS IN THE U.S. AND INTERNATIONALLY. THE ULFS MISSION IS TO PROVIDE SUPPORT TO THE LEUKODYSTROPHY COMMUNITY AND ENABLE PLATFORMS TO ACCELERATE IMPROVING PATIENT QUALITY OF LIFE AND FINDING CURES. THREE OF THE ULFS MAIN ACCOMPLISHMENTS INCLUDE 1 SUPPORTING LEUKODYSTROPHY RESEARCH TO DISCOVER IMPROVED THERAPIES AND ULTIMATELY A CURE 2 PRESENTING AN ANNUAL EDUCATIONAL SCIENTIFIC SYMPOSIUM AND FAMILY CONFERENCE AND 3 PROVIDING EDUCATION AND MEDICAL REFERRALS TO PATIENTS AND FAMILIES AFFECTED BY THE DISEASE.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Christopher Rice Executive Director | OfficerTrustee | 40 | $61,092 |
Donna Skwirut Treasurer | OfficerTrustee | 2 | $0 |
Sa Von Rudenick Secretary | OfficerTrustee | 2 | $0 |
Ron Chapleau Vice President | OfficerTrustee | 2 | $0 |
John Wolf Director | Trustee | 2 | $0 |
Robert Rauner President | OfficerTrustee | 15 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $4,486 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $563,260 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $567,746 |
| Total Program Service Revenue | $0 |
| Investment income | $37,387 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | -$111,422 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $5,186 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $498,897 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $20,000 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $64,940 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $61,092 |
| Compensation of current officers, directors, key employees. | $30,546 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $110,903 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $1,505 |
| Payroll taxes | $15,257 |
| Fees for services: Management | $4,000 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $17,126 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $836 |
| Advertising and promotion | $3,811 |
| Office expenses | $18,293 |
| Information technology | $53,681 |
| Royalties | $0 |
| Occupancy | $13,633 |
| Travel | $0 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $158,469 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $0 |
| Insurance | $3,524 |
| All other expenses | $0 |
| Total functional expenses | $557,781 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $250,074 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| 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 | $2,206 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $1,199,928 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $4,178 |
| Total assets | $1,456,386 |
| Accounts payable and accrued expenses | $9,345 |
| Grants payable | $0 |
| 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 | $0 |
| Total liabilities | $9,345 |
| Net assets without donor restrictions | $649,318 |
| Net assets with donor restrictions | $797,723 |
| 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 | $1,456,386 |
Grants Awarded
Over the last fiscal year, The United Leukodystrophy Foundation Inc has awarded $49,500 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
STANFORD UNIV-SCHOOL OF MEDICINE PURPOSE: Research | $16,500 |
CHILDREN'S HOSPITAL OF PHILADELPHIA PURPOSE: Research | $33,000 |