Cystinosis Research Foundation
CRF is committed to finding a cure through an aggressively funded research agenda. CRF awards research grants bi-annually to accelerate the research process and to ensure that there is never a gap in funding new, cutting-edge research projects. CRF is dedicated to improving the quality of life for cystinosis patients and to finding better treatments, including a cure, for our adults and children living with cystinosis.
Cystinosis Research Foundation at a glance
In short: Cystinosis Research Foundation gave $1.8M across 7 grants in 2025 (avg $252K), mostly in California. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $1,766,737
- +17.4% vs 2024
- Grants made (2025)
- 7
- +40.0% vs 2024
- Average grant
- $252,391
- -16.1% vs 2024
- Median grant
- $245,000
- Total assets
- $10,029,960
- -3.7% vs 2024
- Primary geography
- California (61% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to Cystinosis Research Foundation
Open Grants
3 open opportunities from Cystinosis Research Foundation
Cystinosis Research Foundation Research Grants
Cystinosis Research Foundation
Amount
Varies by project (examples: $42,801 - $410,810 for individual studies)
Deadline
Deadline not published
Cystinosis Research Proposals Grant
Cystinosis Research Foundation
Amount
Varies
Deadline
Deadline not published
Postdoctoral Research Fellowships Grant
Cystinosis Research Foundation
Amount
Up to US $75,000
Deadline
Deadline not published
Who Cystinosis Research Foundation funds
How this funder distributes its grants
Top Recipients
Top 7 recipients in 2025
The largest 2025 recipient was Massachusetts General Hospita ($466K). Together the top 7 received $1.8M.
Grant Size Distribution
26 grants across all recorded years
The most common grant size was in the $250–500K range: 12 grants of 26 (46%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 7 itemized grants.
Cities
How Cystinosis Research Foundation gives
- Giving grew 54% from 2022 to 2025. 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 2019 to 2025, annual grant giving ranged from $620K (2023) to $2.7M (2019). In 2025 it made 7 grants totaling $1.8M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Massachusetts General Hospita Boston, MA | Medical Research | $465,595 |
| The Scripps Institute La Jolla, CA | Medical Research | $450,000 |
| University of California SD La Jolla, CA | Medical Research | $263,204 |
| Stanford University Stanford, CA | Medical Research | $245,000 |
| Harvard University Cambridge Cambridge, MA | Medical Research | $150,000 |
| Univ of CA-Irvine Irvine, CA | Medical Research | $117,938 |
| Harvard Medical School Boston, MA | Medical Research | $75,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $10,029,960 | $3,177,424 | $3,438,007 | $1,766,737 | 7 | $731,957 |
| 2024 | $10,415,384 | $3,187,305 | $4,157,212 | $1,504,851 | 5 | $447,518 |
| 2023 | $10,305,666 | $3,244,975 | $2,871,720 | $620,000 | 3 | $350,852 |
| 2022 | $10,168,657 | $3,589,447 | $3,072,713 | $1,144,436 | 3 | $668,443 |
| 2021 | $10,349,578 | $3,809,513 | $3,470,840 | $1,836,012 | 8 | $151,448 |
| 2019 | $9,691,493 | $5,402,719 | $5,870,413 | $2,739,640 | 7 | $54,850 |
About Cystinosis Research Foundation
Based on IRS filings
Cystinosis Research Foundation is a public charity focused on Medical Research, based in Irvine, CA. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $10.0M in total assets. In 2025, it awarded 7 grants totaling $1.8M. Net investment income was $732K.
Focus Areas
Leadership & Key People
Officers and directors from IRS filings
Cystinosis Research Foundation is led by Nancy J. Stack, Chair - Trustee on every filing since 2019; none of the 17 officers listed in 2025 report compensation.
Officers on the 2025 filing
Nancy J. Stack
Chair - Trustee
On filings since 2019
40 hrs/week
No compensation reported
Brian Sturgis
Trustee
On filings since 2019
No compensation reported
Bruce Crair
Trustee
On filings since 2019
No compensation reported
David W. Mossman
Trustee
On filings since 2019
No compensation reported
Denice Flerchinger
Trustee
On filings since 2019
No compensation reported
Jill Emerson CPA
Trustee
On filings since 2019
No compensation reported
Kevin Partington
Trustee
On filings since 2019
No compensation reported
Marcu Alexander
Trustee
On filings since 2019
No compensation reported
Stephanie Cherqui PhD
Trustee
On filings since 2019
No compensation reported
Stephen L. Jenkins
Trustee
On filings since 2019
No compensation reported
Teresa Partington
Trustee
On filings since 2019
No compensation reported
Barbara Kulyk
Trustee
On filings since 2021
No compensation reported
Angela Kirchoff
Trustee
On filings since 2023
No compensation reported
Clay Emerson Phd Pe Cfm
Trustee
On filings since 2023
No compensation reported
Kristen Murray
Trustee
On filings since 2023
No compensation reported
Donald L. Solsby
Treasurer - Tte
On filings since 2019
2 hrs/week
No compensation reported
Geoffrey Stack
Vice Chair-Ttee
On filings since 2019
No compensation reported
Former officers (8)
- Former: Erin Little (2019–2022) — Trustee
- Former: Lauren Hartz (2019–2022) — Trustee
- Former: Angela Kirchhof (2022) — Trustee
- Former: John S. Hagestad (2019–2021) — Trustee
- Former: Michael K. Hayde (2019–2021) — Trustee
- Former: Natalie Stack (2019–2021) — Trustee
- Former: Thomas A. Gendron (2019–2021) — Trustee
- Former: Traci Gendron (2019–2021) — Trustee
Data from IRS Form 990 filings, 2019–2025. "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 Foundation
How much does Cystinosis Research Foundation give each year?
Cystinosis Research Foundation gave $1.8M across 7 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $1.5M across 5 grants.
What is Cystinosis Research Foundation's typical grant size?
Cystinosis Research Foundation's median grant in 2025 was $245,000, and its average grant was $252,391, across 7 grants on its 2025 IRS Form 990.
Where does Cystinosis Research Foundation give grants?
Cystinosis Research Foundation gives mostly in California: 61% of the grant dollars itemized on its 2025 IRS Form 990 went to recipients there. The next largest state was Massachusetts (39%). The most frequent recipient cities were La Jolla, CA (2 grants) and Boston, MA (2 grants).
Does Cystinosis Research Foundation give general operating support?
Not in 2025: none of the 7 grants with a stated purpose on Cystinosis Research Foundation's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "Medical Research" (7 grants).
Who are Cystinosis Research Foundation's largest grantees?
Cystinosis Research Foundation's largest 2025 grantees include Massachusetts General Hospita ($465,595), The Scripps Institute ($450,000) and University of California SD ($263,204), according to its 2025 IRS Form 990. Together they received 67% of its itemized 2025 grant dollars.
How large is Cystinosis Research Foundation?
Cystinosis Research Foundation reported $10.0M in total assets on its 2025 IRS Form 990. Its revenue that year was $3.2M.
What is Cystinosis Research Foundation?
Cystinosis Research Foundation is a public charity focused on Medical Research, based in Irvine, CA. It holds $10.0M in total assets as of 2025.
What is Cystinosis Research Foundation's EIN?
Cystinosis Research Foundation's EIN (Employer Identification Number) is 32-0067668. IRS Form 990 filing data is available on this page for 2019–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2019 (received by the IRS February 24, 2020)
- Updated Form 990 for fiscal year 2021 (received by the IRS February 22, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS January 10, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS December 12, 2023)
- Updated Form 990 for fiscal year 2024 (received by the IRS December 9, 2024)
- Updated Form 990 for fiscal year 2025 (received by the IRS January 14, 2026)
- IRS filings on file for fiscal years 2019–2025
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Cystinosis Research Foundation down — hundreds of funders to go?