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.
Key facts about Cystinosis Research Network Inc
In short: Cystinosis Research Network Inc gave $37K across 1 grant in 2024 (avg $37K), mostly in California. Source: 2024 IRS Form 990.
- EIN
- 04-3323789
- Latest 990 filing
- Form 990, 2024
- Annual giving (2024)
- $36,666
- Grants made (2024)
- 1
- Average grant
- $36,666
- Median grant
- $36,666
- Total assets
- $604,986
- Primary geography
- California (100% of itemized 2024 grant dollars)
Data from IRS Form 990, 2024; updated September 2026.
Financial Overview
From 2024 IRS Form 990 · View filing
Total Assets
$605K
+102.8% YoY
Annual Giving
$37K
+3.3% YoY
Grant Count
1
+0.0% YoY
Avg Grant Size
$37K
+3.3% YoY
How Cystinosis Research Network Inc gives
- Giving fell 75% from 2021 to 2024. Method
From the foundation's IRS Form 990 filings. Methodology.
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
Open Grants
5 open opportunities from Cystinosis Research Network Inc
CRN Individual with Cystinosis Scholarship
Cystinosis Research Network Inc
Amount
Varies
Deadline
Rolling / Open
CRN Sierra Woodward Sibling Scholarship
Cystinosis Research Network Inc
Amount
Varies
Deadline
Rolling / Open
Cystinosis Ireland Seedcorn Funding
Cystinosis Research Network Inc
Amount
€10,000 per project (more where justified)
Deadline
Rolling / Open
Ready to take the next step with Cystinosis Research Network Inc?
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of the 2024 grant dollars on its one itemized grant.
States
Cities
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.
Grant Insights
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%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| The Regents of the University of CA Los Angeles, CA | Research Grant | $36,666 |
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $604,986 | $298,290 | $505,368 |
| Revenue | $646,021 | $511,051 | $346,267 |
| Expenses | $356,700 | $690,537 | $537,436 |
| Net Investment Income | $13,283 | $2,967 | $394 |
Data update history
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
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.
Here's the math on researching Cystinosis Research Network Inc by hand.
Explore Open Grants
Browse active grant opportunities in Cystinosis Research Network Inc's focus areas in our free grants database
Similar Funders
Funders that support many of the same organizations
National Kidney Foundation Inc
New York, NY
The National Kidney Foundation is revolutionizing the fight to save lives by eliminating preventable kidney disease, accelerating innovation for the dignity of the patient experience, and dismantling structural inequities in kidney care, dialysis, and transplantation.
Assets
$51.5M
Grants
9
Total Given
$678K
The Pershing Square Foundation
New York, NY
The Pershing Square Foundation funds leaders and organizations addressing health and life-sciences, education, economic development, innovation, and other societal and environmental challenges, with much of its giving in New York and grants also made elsewhere in the U.S. Its 2024 grants ranged from $7,500 to $750,000, with a median of $250,000. It accepts contributions only for preselected organizations and does not accept unsolicited requests, though its prize programs have separate application processes.
Assets
$414.6M
Grants
56
Total Given
$10.9M
The McKnight Endowment Fund for Neuroscience
Minneapolis, MN
The McKnight Endowment Fund for Neuroscience funds competitive research on brain and behavioral disorders, including work on their biological mechanisms and potential diagnosis, prevention, and treatment. Its 2024 grants ranged from $16,500 to $110,310, with a median of $75,000, and went to organizations in multiple U.S. states. It offers annual award programs with online applications; whether it accepts unsolicited requests is not stated.
Assets
—
Grants
45
Total Given
$3.4M
New York STEM Cell Foundation Inc
New York, NY
The New York Stem Cell Foundation funds stem cell research, postdoctoral fellowships, and five-year seed awards for early-career stem cell researchers and neuroscientists. In 2025, grants ranged from $61,000 to $600,000, with a median of $300,000, and went to institutions in multiple states; fellowship hosts must be in New York, New Jersey, or Connecticut, while investigator awards are open nationally.
Assets
$61.9M
Grants
18
Total Given
$5.8M
The Chicago Community Trust
Chicago, IL
The Chicago Community Trust funds nonprofits addressing economic mobility, wealth gaps, and urgent community needs, with priorities including homeownership, small businesses, education, quality jobs, and investment in underinvested communities. Its 2025 itemized grants had a median of $26,500, though awards vary widely; grants generally benefit Chicago-region residents, and the Trust directs applicants to open opportunities but does not state whether it accepts unsolicited requests.
Assets
$7.1B
Grants
4,316
Total Given
$1.2B
Association of University Centers on Disabilities
Silver Spring, MD
AUCD funds research, education, and services that support people with developmental and other disabilities and their families, including work through university and medical-center programs. Its 2025 awards ranged from $7,884 to $364,710, with a median of $82,660, and recipients were in several U.S. states and Washington, D.C.; its network spans all states and territories. The cited materials do not state whether it accepts unsolicited requests.
Assets
$5.1M
Grants
8
Total Given
$955K
American Cancer Society Inc
Atlanta, GA
The American Cancer Society funds cancer research, patient support, advocacy, and related programs, with research support available to institutions across the United States. Its 2025 grants ranged from $5,648 to $9.6 million, with a median of $15,000. It accepts applications for research grants through specific programs and ProposalCentral; the profile does not state whether it accepts unsolicited requests for other funding.
Assets
$1.7B
Grants
509
Total Given
$23.1M
National Pediatric Cancer Foundation Inc
Tampa, FL
National Pediatric Cancer funds pediatric cancer research and clinical trials, particularly efforts to develop less toxic, targeted treatments, through hospital and research-institution partnerships nationwide. In 2025, grants ranged from about $37,000 to $992,000, with a median of about $95,000; it offered a specific research RFA, but the profile does not state whether it accepts unsolicited requests generally.
Assets
$6.2M
Grants
15
Total Given
$3.4M
T Rowe Price Foundation
Baltimore, MD
The T. Rowe Price Foundation supports financial well-being and thriving communities, including financial education, youth development, arts and culture, and community leaders and institutions. Its 2024 grants had a median of $15,000, with awards ranging from $1,000 to $5.5 million; it focuses on Baltimore, Colorado Springs, San Francisco, and New York, with grants also reported in Delaware. It reviews unsolicited requests through an inquiry process, but most grants are by invitation and there is no open application process.
Assets
$93.3M
Grants
249
Total Given
$11.7M
American Foundation for Suicide Prevention
New York, NY
AFSP primarily funds scientific research to understand and prevent suicide, test interventions, and put evidence-based prevention strategies into practice. Its 2025 grants ranged from $7,500 to $500,000, with a median award of $62,500; its programs and grantmaking reach nationwide, and its Blue Sky grant is not limited to U.S. studies.
Assets
$95.6M
Grants
70
Total Given
$7.2M
Emory University
Atlanta, GA
Emory University funds research, health care, and medical research, including university research awards and subcontract grants to organizations. Its 2024 grants had a median of about $87,500, though awards ranged from about $5,300 to $35.5 million; recipients were concentrated in Georgia, which received 46% of grant dollars. The profile does not state whether Emory accepts unsolicited requests.
Assets
$24.9B
Grants
362
Total Given
$183.7M
The Allstate Foundation
Northbrook, IL
The Allstate Foundation funds youth empowerment, efforts to prevent and address relationship abuse, nonprofit leadership, and related economic opportunity and equity work. Its 2024 grants ranged from $250 to $2 million, with a median of $1,000, and awards must support work in the United States. It accepts proposals from organizations beyond a preselected list; proposals are reviewed as received.
Assets
—
Grants
2,010
Total Given
$38.0M
More Funders in Illinois
Cystinosis Research Network Inc down — hundreds of funders to go?