Nonprofit · EIN 04-3323789
CYSTINOSIS RESEARCH NETWORK INCORPORATED
Tax-exempt · LAKE FOREST, IL 60045
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2024 | 990 | $646,021 | $356,700 | $289,321 | $604,986 | $43,460 | $561,526 |
| December 31, 2023 | 990 | $511,051 | $690,537 | -$179,486 | $298,290 | $26,085 | $272,205 |
Financial details: 990 for the year ended December 31, 2024
Revenue
- Contributions, gifts and grants
- $632,738
- Program service revenue
- $0
- Investment income
- $13,283
- Other revenue
- $0
Expenses
- Grants and similar amounts paid
- $64,988
- Salaries, compensation and benefits (total)
- $0
- Professional fundraising fees
- $0
- Accounting fees
- $15,015
- Program services (functional)
- $267,297
- Management and general (functional)
- $73,053
- Fundraising (functional)
- $16,350
Balance sheet and other
- Total assets, start of year
- $298,290
- Total assets, end of year
- $604,986
- Total liabilities, end of year
- $43,460
- Net assets, end of year
- $561,526
- Net assets without donor restrictions
- $514,557
- Net assets with donor restrictions
- $46,969
- Gross receipts
- $646,021
- Employees
- 0
- Volunteers
- 20
- Year formed
- 1996
- State of legal domicile
- MA
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2024, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| JOHNATHAN DICKS | PRESIDENT, V Trustee or director, Officer | 16 | $0 |
| KAREN GLEDHILL | SECRETARY Trustee or director, Officer | 2 | $0 |
| CAROL HUGHES | DIRECTOR Trustee or director | 7 | $0 |
| CLAIR JOHNSTONE | EXECUTIVE DI Trustee or director, Officer | 4 | $0 |
| MARYBETH KRUMMENACKER | VP EDUCATION Trustee or director, Officer | 4 | $0 |
| CHELSEA MESCHKE | VP FAMILY SU Trustee or director, Officer | 2 | $0 |
| MEGAN MORRILL | DIRECTOR Trustee or director | 3 | $0 |
| GAIL POTTS | DIRECTOR Trustee or director | 2 | $0 |
| HEATHER FIELDS ROTHROCK | DIRECTOR Trustee or director | 1 | $0 |
| TERRI SCHLEUDER | DIRECTOR Trustee or director | 1 | $0 |
| KRISTINA SEVEL | VP RESEARCH Trustee or director, Officer | 2 | $0 |
| HERBERTH SIGLER | DIRECTOR Trustee or director | 1 | $0 |
| JEN WYMAN | DIRECTOR Trustee or director | 2 | $0 |
| TIM WYMAN | TREASURER Trustee or director, Officer | 1 | $0 |
990 for the year ended December 31, 2023: 15 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| JOHNATHAN DICKS | PRESIDENT, V Trustee or director, Officer | 16 | $0 |
| KAREN GLEDHILL | SECRETARY Trustee or director, Officer | 2 | $0 |
| CHRISTY GREELEY | EXEC DIR & V Trustee or director, Officer | 8 | $0 |
| CAROL HUGHES | DIRECTOR Trustee or director | 7 | $0 |
| CLAIR JOHNSTONE | EXECUTIVE DI Trustee or director, Officer | 4 | $0 |
| MARYBETH KRUMMENACKER | VP EDUCATION Trustee or director, Officer | 4 | $0 |
| CHELSEA MESCHKE | VP FAMILY SU Trustee or director, Officer | 2 | $0 |
| MEGAN MORRILL | DIRECTOR Trustee or director | 3 | $0 |
| GAIL POTTS | DIRECTOR Trustee or director | 2 | $0 |
| HEATHER FIELDS ROTHROCK | DIRECTOR Trustee or director | 1 | $0 |
| TERRI SCHLEUDER | DIRECTOR Trustee or director | 1 | $0 |
| KRISTINA SEVEL | VP RESEARCH Trustee or director, Officer | 2 | $0 |
| HERBERTH SIGLER | DIRECTOR Trustee or director | 1 | $0 |
| JEN WYMAN | DIRECTOR Trustee or director | 2 | $0 |
| TIM WYMAN | TREASURER Trustee or director, Officer | 1 | $0 |
Address and contacts
- Address (IRS master file)
- PO BOX 702, LAKE FOREST, IL 60045-0702
- In care of
- % JOHN A HAMMOND TREAS
- Principal officer (990 for 2024)
- CLAIR JOHNSTONE, PO BOX 702, LAKE FOREST, IL 60045
- Signed the 990
- CLAIR JOHNSTONE, EXECUTIVE DIRECTOR
- Phone
- (847) 735-0471
- Website
- WWW.CYSTINOSIS.ORG
- Return prepared by
- MATTINA KENT & GIBBONS PC
Mission
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.
Program accomplishments
- THE ORGANIZATION ESTABLISHES AND FUNDS FELLOWSHIPS AND RESEARCH GRANTS FOCUSING ON CLINICAL AND RESEARCH TRAINING IN CYSTINOSIS.Expenses $55,791 · grants $55,791
- 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.Expenses $187,667 · grants $5,000
- 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.Expenses $23,839 · grants $4,197
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | Not on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 04-3323789
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1996
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Education (B99)
- Assets (IRS master file)
- $604,986
- Income (IRS master file)
- $646,021
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2024 | $646,021 | $356,700 | $604,986 | XML |
| 990 | December 2023 | $511,051 | $690,537 | $298,290 | XML |
| 990 | December 2022 | $346,267 | $537,436 | $505,368 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 04-3323789).
Questions about CYSTINOSIS RESEARCH NETWORK INCORPORATED
- What is the EIN of CYSTINOSIS RESEARCH NETWORK INCORPORATED?
- The employer identification number (EIN) of CYSTINOSIS RESEARCH NETWORK INCORPORATED is 04-3323789.
- Is CYSTINOSIS RESEARCH NETWORK INCORPORATED tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1996.
- Are donations to CYSTINOSIS RESEARCH NETWORK INCORPORATED tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does CYSTINOSIS RESEARCH NETWORK INCORPORATED file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of CYSTINOSIS RESEARCH NETWORK INCORPORATED due?
- The return for tax year 2025 (the year ending December 31, 2025) is due May 15, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did CYSTINOSIS RESEARCH NETWORK INCORPORATED last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2024.
- Who is the principal officer of CYSTINOSIS RESEARCH NETWORK INCORPORATED?
- The 990 for the year ended December 31, 2024 names CLAIR JOHNSTONE.
- Who are the officers and directors of CYSTINOSIS RESEARCH NETWORK INCORPORATED?
- The 990 for the year ended December 31, 2024 lists 14 people; 0 received compensation from the organization.
- How much revenue does CYSTINOSIS RESEARCH NETWORK INCORPORATED have?
- On its 990 for the year ended December 31, 2024 it reported revenue of $646,021, expenses of $356,700 and total assets of $604,986 at year end.
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