Cystinosis Research Network Incorporated
- Assets
- $505.4k
- Revenue
- $346.3k
- Investments
- $0.0
- Employees
- 0
- Location
- Lake Forest, IL
- Founding
- 11/1996
- Data as of
- 12/2022
- EIN
- 04-3323789
Organization Overview
Cystinosis Research Network Incorporated is located in Lake Forest, IL. The organization was established in 1996. According to its NTEE Classification (B99) the organization is classified as: Education N.E.C., under the broad grouping of Education and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Cystinosis Research Network Incorporated 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, Cystinosis Research Network Incorporated generated $346.3k in total revenue. This represents a relatively dramatic decline in revenue. Over the past 8 years, the organization has seen revenues fall by an average of (7.0%) each year. All expenses for the organization totaled $537.4k during the year ending 12/2022. As we would expect to see with falling revenues, expenses have declined by (3.1%) per year over the past 8 years. 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
THE CYSTINOSIS RESEARCH NETWORK IS AN ALL VOLUNTEER, NON-PROFIT ORGANIZATION DEDICATED TO SUPPORTING AND ADVOCATING RESEARCH, PROVIDING FAMILY ASSISTANCE AND EDUCATING THE PUBLIC AND MEDICAL COMMUNITIES ABOUT CYSTINOSIS.
Describe the Organization's Program Activity:
Part 3 - Line 4a
THE ORGANIZATION ESTABLISHES AND FUNDS FELLOWSHIPS AND RESEARCH GRANTS FOCUSING ON CLINICAL AND RESEARCH TRAINING IN CYSTINOSIS.
THE ORGANIZATION RAISES AWARENESS AND REINFORCES STRONG RELATIONSHIPS THROUGH REPRESENTATION AT NATIONAL MEDICAL CONFERENCES, AFFILIATION WITH OTHER ORGANIZATIONS, PUBLICATION OF PERIODIC NEWSLETTERS AND AWARDS OR EDUCATIONAL SCHOLARSHIPS TO INDIVIDUALS WITH CYSTINOSIS AND THEIR SIBLINGS.
THE ORGANIZATION PROVIDES INFORMATION AND OPPORTUNITIES TO NETWORK FOR INDIVIDUALS WITH CYSTINOSIS AND THEIR FAMILIES THROUGH PARTICIPATION IN A BIENNIAL CONFERENCE ON CYSTINOSIS. IT ALSO SUPPORTS NEWLY DIAGNOSED AND EXISTING FAMILIES BY PROVIDING ACCESS TO WORLD EXPERTS VIA ADVISORY BOARDS, MODERATION OF AN EMAIL SUPPORT GROUP AND INFORMATION PACKETS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Christy Greeley Exec Dir & VP Research | OfficerTrustee | 15 | $0 |
Johnathan Dicks President, VP Development | OfficerTrustee | 2 | $0 |
Tim Wyman Treasurer | OfficerTrustee | 3 | $0 |
Karen Gledhill Secretary | OfficerTrustee | 1 | $0 |
Marybeth Krummenacker VP Education & Awareness | OfficerTrustee | 4 | $0 |
Kristina Sevel VP Research | OfficerTrustee | 2 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $334 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $345,539 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $345,873 |
| Total Program Service Revenue | $0 |
| Investment income | $394 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $346,267 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $229,297 |
| Grants and other assistance to domestic individuals. | $14,238 |
| Grants and other assistance to Foreign Orgs/Individuals | $90,192 |
| 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 | $0 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $0 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $990 |
| Fees for services: Accounting | $27,837 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $44,290 |
| Advertising and promotion | $61,340 |
| Office expenses | $15,505 |
| Information technology | $812 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $42,159 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $5,171 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $1,550 |
| Insurance | $4,055 |
| All other expenses | $0 |
| Total functional expenses | $537,436 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $183,326 |
| Savings and temporary cash investments | $322,042 |
| 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 | $0 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $505,368 |
| Accounts payable and accrued expenses | $41,700 |
| Grants payable | $0 |
| Deferred revenue | $11,977 |
| 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 | $53,677 |
| Net assets without donor restrictions | $386,323 |
| Net assets with donor restrictions | $65,368 |
| 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 | $505,368 |
Grants Awarded
Over the last fiscal year, Cystinosis Research Network Incorporated has awarded $229,297 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
ALBERT EINSTEIN COLLEGE OF MEDICINE PURPOSE: RESEARCH GRANT | $157,597 |
THE REGENTS OF THE UNIVERSITY OF CALIFORNIA PURPOSE: RESEARCH GRANT | $71,700 |