Cystinosis Research Network Incorporated
Donations deductibleCystinosis Research Network Incorporated's network
14 peoplei14 people on this map.The large node is the subject of this page. Solid lines are what the register itself records (14). Form 990 filings give names without a person identifier; SEC insider filings carry a CIK.The board
14 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations.Time served and departures are observed across annual filings. Observed time served is a lower bound - a member may have joined before the first year on record. The organisation reported 13 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.| Name | Role as filed | Since | On the board |
|---|---|---|---|
| Carol Hughes | Director | 2018 | 8 yrs |
| Chelsea Meschke | VP Family Su | 2022 | 4 yrs |
| Clair Johnstone | Executive Di | 2023 | 3 yrs |
| Gail Potts | Director | 2018 | 8 yrs |
| Heather Fields Rothrock | Director | 2022 | 4 yrs |
| Herberth Sigler | Director | 2018 | 8 yrs |
| Jen Wyman | Director | 2018 | 8 yrs |
| Johnathan Dicks | President, V | 2020 | 6 yrs |
| Karen Gledhill | Company secretary | 2022 | 4 yrs |
| Kristina Sevel | VP Research | 2022 | 4 yrs |
| Marybeth Krummenacker | VP Education | 2018 | 8 yrs |
| Megan Morrill | Director | 2022 | 4 yrs |
| Terri Schleuder | Director | 2022 | 4 yrs |
| TIM Wyman | Treasurer | 2020 | 6 yrs |
Pay and hours
year to 31 December 2024iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.| Name | Title as filed | Hours a week | Pay from the organisation | Related organisations | Other |
|---|---|---|---|---|---|
| Johnathan Dicks | President, V | 16 | $0 | ||
| Karen Gledhill | Secretary | 2 | $0 | ||
| Carol Hughes | Director | 7 | $0 | ||
| Clair Johnstone | Executive Di | 4 | $0 | ||
| Marybeth Krummenacker | VP Education | 4 | $0 | ||
| Chelsea Meschke | VP Family Su | 2 | $0 | ||
| Megan Morrill | Director | 3 | $0 | ||
| Gail Potts | Director | 2 | $0 | ||
| Heather Fields Rothrock | Director | 1 | $0 | ||
| Terri Schleuder | Director | 1 | $0 | ||
| Kristina Sevel | VP Research | 2 | $0 | ||
| Herberth Sigler | Director | 1 | $0 | ||
| Jen Wyman | Director | 2 | $0 | ||
| Tim Wyman | Treasurer | 1 | $0 |
No pay was reported for anyone in Part VII on this return.
About
- Legal name
- Cystinosis Research Network Incorporated
- EIN
- 043323789
- Address
- Po Box 702, Lake Forest, IL, 60045-0702
- State
- Illinois
- 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. (as filed on the Form 990)
- Activity (NTEE)
- B99 Education
- IRS classification
- 501(c)03 (tax-exempt under section 501(c)(3) where shown)
- Classified purpose
- Education
- Size band
- 5 (IRS master file code)
- Formed
- 1996
- Principal officer
- Clair Johnstone (as named on the Form 990)
- IRS ruling date
- 1 November 1996
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 6, latest 2024
- IRS Publication 78
- PC (contributions deductible)
Most connected
Longest observed on the filings
≥8years on the filingsCarol Hughes
≥8years on the filingsGail Potts
≥8years on the filingsHerberth Sigler
≥8years on the filingsJen Wyman
Latest return
year to 31 December 2024iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2024. US dollars, as filed.- Total assets
- $605k
- Total liabilities
- $43k
- Net assets or fund balances
- $562k
- Contributions and grants received
- $633k
- Program service revenue
- $0
- Grants and similar paid out
- $65k
- Employees
- 0
- Volunteers
- 20
Filed finances
1 yeariTotals as filed on the IRS Form 990 (revenue and expenses), by tax year.| Tax year | Total revenue | Total expenses | Surplus or deficit |
|---|---|---|---|
| 2024 | $646k | $357k | $289k |
As filed on the IRS Form 990. US dollars.
Grants paid
1 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.| Recipient | Purpose | Amount |
|---|---|---|
| The Regents of the University of Ca | Research grant | $37k |