Cystinosis Research Network Inc
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.
Cystinosis Research Network Inc at a glance
In short: Cystinosis Research Network Inc gave $37K across 1 grant in 2024 (avg $37K), mostly in California. Source: 2024 IRS Form 990.
- Annual giving (2024)
- $36,666
- +3.3% vs 2023
- Grants made (2024)
- 1
- +0.0% vs 2023
- Average grant
- $36,666
- +3.3% vs 2023
- Median grant
- $36,666
- Total assets
- $604,986
- +102.8% vs 2023
- Primary geography
- California (100% of itemized 2024 grant dollars)
- Latest 990 filing
- Form 990, 2024 View filing
Data from IRS Form 990, 2024; updated September 2026.
How to apply to Cystinosis Research Network Inc
Open Grants
5 open opportunities from Cystinosis Research Network Inc
CRN Individual with Cystinosis Scholarship
Cystinosis Research Network Inc
Amount
Varies
Deadline
Deadline not published
CRN Sierra Woodward Sibling Scholarship
Cystinosis Research Network Inc
Amount
Varies
Deadline
Deadline not published
Cystinosis Ireland Seedcorn Funding
Cystinosis Research Network Inc
Amount
€10,000 per project (more where justified)
Deadline
Deadline not published
Who Cystinosis Research Network Inc funds
How this funder distributes its grants
Top Recipients
Top recipient in 2024
The largest 2024 recipient was The Regents of the University of CA ($37K).
Grant Size Distribution
7 grants across all recorded years
The most common grant size was under $50K: 3 grants of 7 (43%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of the 2024 grant dollars on its one itemized grant.
States
Cities
How Cystinosis Research Network Inc gives
- Giving fell 75% from 2021 to 2024. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $34K (2020) to $229K (2022). In 2024 it made 1 grant totaling $37K.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| The Regents of the University of CA Los Angeles, CA | Research Grant | $36,666 |
Ready to take the next step with Cystinosis Research Network Inc?
Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2024 | $604,986 | $646,021 | $356,700 | $36,666 | 1 | $13,283 |
| 2023 | $298,290 | $511,051 | $690,537 | $35,491 | 1 | $2,967 |
| 2022 | $505,368 | $346,267 | $537,436 | $229,297 | 2 | $394 |
| 2021 | $679,647 | $543,210 | $412,057 | $149,271 | 2 | $713 |
| 2020 | $540,033 | $527,497 | $200,789 | $33,660 | 1 | $1,096 |
About Cystinosis Research Network Inc
Based on IRS filings
Cystinosis Research Network Inc is a public charity focused on Education, based in Lake Forest, IL. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $605K in total assets. In 2024, it awarded 1 grant totaling $37K. Net investment income was $13K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Cystinosis Research Network Inc is led by Johnathan Dicks, President & V since 2023 (on filings since 2020); none of the 14 officers listed in 2024 report compensation.
Officers on the 2024 filing
Johnathan Dicks
President & V
Vice President & Development → President & Vice President Development, 2022
President & Vice President Development → President & V, 2023
On filings since 2020
16 hrs/week
No compensation reported
Carol Hughes
Director
On filings since 2020
7 hrs/week
No compensation reported
Gail Potts
Director
On filings since 2020
2 hrs/week
No compensation reported
Herberth Sigler
Director
On filings since 2020
1 hr/week
No compensation reported
Jen Wyman
Director
Vice President & Family Support → Director, 2022
On filings since 2020
2 hrs/week
No compensation reported
Heather Fields Rothrock
Director
On filings since 2022
1 hr/week
No compensation reported
Megan Morrill
Director
On filings since 2022
3 hrs/week
No compensation reported
Terri Schleuder
Director
On filings since 2022
1 hr/week
No compensation reported
Marybeth Krummenacker
Vice President Education
Vice President, Education & Awareness → Vice President Education & Awareness, 2022
Vice President Education & Awareness → Vice President Education, 2023
On filings since 2020
4 hrs/week
No compensation reported
Tim Wyman
Treasurer
Director → Treasurer, 2021
On filings since 2020
1 hr/week
No compensation reported
Karen Gledhill
Secretary
On filings since 2021
2 hrs/week
No compensation reported
Kristina Sevel
Vice President Research
Director → Vice President Research, 2022
On filings since 2021
2 hrs/week
No compensation reported
Chelsea Meschke
Vice President Family Su
Vice President Family Support → Vice President Family Su, 2023
On filings since 2022
2 hrs/week
No compensation reported
Clair Johnstone
Executive Di
On filings since 2023
4 hrs/week
No compensation reported
Former officers (11)
- Former: Christy Greeley (2020–2023) — Executive Director & V
- Former: Andrea Carr (2020–2021) — Director - Term
- Former: Anna Pruitt (2020–2021) — Director - Term
- Former: Clinton Moore (2020–2021) — President - Term
- Former: Ina Gardener (2020–2021) — Secretary - Term
- Former: Jenni Sexstone (2020–2021) — Treasurer - Term
- Former: Jennifer Loglisci (2020–2021) — Director - Term
- Former: John Maccarone (2020–2021) — Director - Term
- Former: Kristen Stilke (2020–2021) — Director - Term
- Former: Larry Thomas (2020–2021) — Director - Term
- Former: Melanie Vachon (2020–2021) — Director - Term
Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Frequently asked questions about Cystinosis Research Network Inc
How much does Cystinosis Research Network Inc give each year?
Cystinosis Research Network Inc gave $37K across 1 grant in 2024, according to its 2024 IRS Form 990. In 2023 it gave $35K across 1 grant.
How large is Cystinosis Research Network Inc?
Cystinosis Research Network Inc reported $605K in total assets on its 2024 IRS Form 990. Its revenue that year was $646K.
What is Cystinosis Research Network Inc?
Cystinosis Research Network Inc is a public charity focused on Education, based in Lake Forest, IL. It holds $605K in total assets as of 2024.
Where does Cystinosis Research Network Inc operate?
Cystinosis Research Network Inc has awarded grants in California, New York.
What is Cystinosis Research Network Inc's EIN?
Cystinosis Research Network Inc's EIN (Employer Identification Number) is 04-3323789. IRS Form 990 filing data is available on this page for 2020–2024.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(6)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS November 11, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS November 14, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS November 15, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS November 15, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS September 10, 2025)
- IRS filings on file for fiscal years 2020–2024
Live grants for the work Cystinosis Research Network Inc funds
Education Open opportunities, soonest deadline first.
Explore Open Grants
Browse active grant opportunities in Cystinosis Research Network Inc's focus areas in our free grants database
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Cystinosis Research Network Inc down — hundreds of funders to go?