Civic Intelligence

Cystinosis Research Foundation

EIN 32-0067668 • 501(c)3 • Irvine, CA

Profile

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.

19200 Von Karman Avenue 920Irvine, CA 92612

www.cystinosisresearch.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

58th percentile

0.25x

Higher debt load relative to assets than 58% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2025

Liabilities / Revenue

77th percentile

0.79x

Higher debt load relative to revenue than 77% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2025

Net Margin

20th percentile

-8.2%

Higher net margin than 20% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Source year 2025

Top Officer Pay

33rd percentile

$0

Higher top officer pay than 33% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

501(c)3 • $10M-$25M nonprofits • Source year 2025

Asset Growth

30th percentile

-0.5%

Faster asset growth than 30% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Annualized from 2022 to 2025

Revenue Growth

26th percentile

-4.0%

Faster revenue growth than 26% of similar nonprofits.

501(c)3 • $10M-$25M nonprofits • Annualized from 2022 to 2025

Assets

Down

$10,029,960

Down $385,424 (-3.7%) from 2024

Liabilities

Down

$2,507,429

Down $161,864 (-6.1%) from 2024

Net Assets

Down

$7,522,531

Down $223,560 (-2.9%) from 2024

Revenue

Down

$3,177,424

Down $9,881 (-0.3%) from 2024

Expenses

Down

$3,438,007

Down $719,205 (-17%) from 2024

Net Income

Up

-$260,583

Up $709,324 (+73%) from 2024

Trend Graphs

Balance Sheet Trend

Grouped bars show assets, liabilities, and net assets across loaded filings.

$15M$10M$5.0M$0Assets 2012: $3,287,069Liabilities 2012: $2,285,060Net Assets 2012: $1,002,0092012Assets 2013: $3,700,806Liabilities 2013: $1,789,743Net Assets 2013: $1,911,0632013Assets 2014: $4,481,739Liabilities 2014: $2,308,233Net Assets 2014: $2,173,5062014Assets 2015: $4,779,733Liabilities 2015: $2,195,760Net Assets 2015: $2,583,9732015Assets 2016: $6,325,183Liabilities 2016: $1,802,763Net Assets 2016: $4,522,4202016Assets 2018: $9,121,015Liabilities 2018: $2,288,514Net Assets 2018: $6,832,5012018Assets 2019: $9,691,493Liabilities 2019: $2,874,211Net Assets 2019: $6,817,2822019Assets 2020: $9,847,694Liabilities 2020: $2,297,970Net Assets 2020: $7,549,7242020Assets 2021: $10,349,578Liabilities 2021: $1,867,136Net Assets 2021: $8,482,4422021Assets 2022: $10,168,657Liabilities 2022: $1,942,498Net Assets 2022: $8,226,1592022Assets 2023: $10,305,666Liabilities 2023: $1,643,150Net Assets 2023: $8,662,5162023Assets 2024: $10,415,384Liabilities 2024: $2,669,293Net Assets 2024: $7,746,0912024Assets 2025: $10,029,960Liabilities 2025: $2,507,429Net Assets 2025: $7,522,5312025

Highlighted filing

2025

Assets$10,029,960
Liabilities$2,507,429
Net Assets$7,522,531

Operations Trend

Revenue, expenses, and net income by year, with the latest filing highlighted.

$6.0M$4.0M$2.0M$0-$2.0MExpenses 2012: $3,206,9822012Revenue 2013: $3,299,549Expenses 2013: $2,447,190Net Income 2013: $852,3592013Revenue 2014: $3,439,384Expenses 2014: $3,103,620Net Income 2014: $335,7642014Revenue 2015: $3,282,703Expenses 2015: $2,798,362Net Income 2015: $484,3412015Revenue 2016: $4,857,558Expenses 2016: $3,037,548Net Income 2016: $1,820,0102016Revenue 2018: $4,655,704Expenses 2018: $4,270,333Net Income 2018: $385,3712018Revenue 2019: $5,402,719Expenses 2019: $5,870,413Net Income 2019: -$467,6942019Revenue 2020: $4,308,424Expenses 2020: $3,362,690Net Income 2020: $945,7342020Revenue 2021: $3,809,513Expenses 2021: $3,470,840Net Income 2021: $338,6732021Revenue 2022: $3,589,447Expenses 2022: $3,072,713Net Income 2022: $516,7342022Revenue 2023: $3,244,975Expenses 2023: $2,871,720Net Income 2023: $373,2552023Revenue 2024: $3,187,305Expenses 2024: $4,157,212Net Income 2024: -$969,9072024Revenue 2025: $3,177,424Expenses 2025: $3,438,007Net Income 2025: -$260,5832025

Highlighted filing

2025

Revenue$3,177,424
Expenses$3,438,007
Net Income-$260,583

Filings

Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jul 1, 2024 to Jun 30, 2025
Signed
Jan 14, 2026
Return Version
2024v5.2
Gross Receipts
$3,229,152
Mission and Program Overview

Mission

Crf's mission is to support bench, clinical and translational research to find better treatments and a cure for cystinosis

Cystinosis Research Foundation's (CRF) mission is to support bench, clinical, and translational research to find better treatments and a cure for cystinosis. CRF is dedicated to funding research that will improve the quality of life for those with cystinosis and to find a cure for this devastating disease.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$5,140,525$5,540,997▲ $400,472
Savings and Temporary Cash Investments$5,144,486$4,442,951▼ $701,535
Land, Buildings, and Equipment, Net$17,123$0▼ $17,123
Prepaid Expenses and Deferred Charges$48,476$12,937▼ $35,539
Cash and Non-Interest-Bearing Accounts-$0-
Accounts Receivable-$0-
Other Notes and Loans Receivable, Net-$0-
Pledges and Grants Receivable-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Total Assets$10,415,384$10,029,960▼ $385,424
Other Assets Total$64,774$33,075▼ $31,699
Liabilities
Grants Payable$2,572,904$2,445,953▼ $126,951
Other Liabilities$64,609$33,511▼ $31,098
Accounts Payable and Accrued Expenses$31,780$27,965▼ $3,815
Total Liabilities$2,669,293$2,507,429▼ $161,864
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$7,746,091$7,522,531▼ $223,560
Total Net Assets Fund Balance$7,746,091$7,522,531▼ $223,560
Total Liabilities and Net Assets / Fund Balance$10,415,384$10,029,960▼ $385,424

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$-8,335$105,247$96,912
Other Land Buildings$6,890$39,945$46,835
Leasehold Improvements$1,445$7,429$8,874
Compensation and Service Providers

Board Members and Trustees

Revenue and Support

Revenue Composition

Contributions and Grants
$2,445,467
Program Service Revenue
$0
Investment Income
$731,957
Other Revenue
$0
All Other Contributions
$2,094,861
Change in Net Assets
$-260,583

Audited Revenue Reconciliation

Revenue per Audited Statements
$3,177,424
Total Revenue per Audited Statements
$3,177,424
Total Revenue per Form 990
$3,177,424
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$2,203,637
Other Expenses$1,155,877
Total Fundraising Expense$171,371
Salaries, Compensation, and Employee Benefits$78,493
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$1,766,737--$1,766,737
Foreign Grants$436,900--$436,900
All Other Expenses$13,049$64,093$50,927$128,069
Fees for Services Accounting$13,188$67,486$11,269$91,943
Other Expenses$64,500$6,364$18,000$88,864
Other Salaries and Wages$69,318$3,289-$72,607
Advertising$5,183-$29,341$34,524
Insurance$16,114--$16,114
Fees for Services Legal$13,039--$13,039
Depreciation Depletion---$8,786
Payroll Taxes$5,303$583-$5,886
Total Functional Expenses$3,072,586$185,264$171,371$3,438,007

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$3,438,007
Total Expenses per Audited Statements$3,438,007
Total Expenses per Form 990$3,438,007
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Massachusetts General HospitaBoston, MA-Medical Research$465,595
The Scripps InstituteLa Jolla, CA-Medical Research$450,000
University of California SdLa Jolla, CA-Medical Research$263,204
Stanford UniversityStanford, CA-Medical Research$245,000
Harvard University CambridgeCambridge, MA-Medical Research$150,000
Univ of Ca-irvineIrvine, CA-Medical Research$117,938
Harvard Medical SchoolBoston, MA-Medical Research$75,000

International Summary

Spending
$436,900

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
SwitzerlandGrantsMedical Research00$350,000
ItalyGrantsMedical Research00$86,900
FranceGrantsMedical Research00$0
GermanyGrantsMedical Research00$0
New ZealandGrantsMedical Research00$0
IsraelGrantsMedical Research00$0
CanadaGrantsMedical Research00$0
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Annual Fundraiser - See Note (4)$350,606---
Total Events$350,606---
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Interested-Person Transactions

Interested PartyRelationshipDescriptionShared RevenueAmount
Zoe SolsbyWife of OfficerCompensationNo-

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Lease Liability-operating$33,511
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
No
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 2

Trustees, geoffrey and nancy stack,are husband and wife. Board members, kevin and teresa partington, are husband and wife.board members, jill and clay emerson, are husband and wife

Form 990, Part VI, Section B, Line 11B

Form 990 is reviewed by board of directors prior to filing. Auditors for the foundation have reviewed the return and provided comments to the tax preparer.

Form 990, Part VI, Section B, Line 12C

Board reviews possible conflicts on an as needed basis and discusses resolutions at board meetings

Form 990, Part VI, Section C, Line 19

Crf maintains the governing documents, policies and procedures and financial statements at its offices in irvine, california. Copies of these documents are available to the public upon request. Our form 990 is posted on our website and on guidestar on the internet.

Filing and Contact Details

Filer

Filer Name
Cystinosis Research Foundation
EIN
32-0067668
Phone
9492237610
Address
19200 VON KARMAN AVENUE 920, IRVINE, CA 92612

Signing Officer

Name
Geoffrey Stack
Title
Trustee
Signed
2026-01-14
Discuss with paid preparer
Yes

Organization Details

Formed
2003
Legal Domicile
CA
Voting Board Members
17
Independent Board Members
17
Employees
1
Volunteers
5

Preparer

Firm
Montgomery Glick & Company
Address
23801 Calabasas Rd Ste 103, Calabasas, CA 91302
Preparer
Peter Montgomery
Phone
8189996967
Supplemental Narrative

Additional Explanations

Statement Note 1

Note (1) - schedule l - part ivnote (1)trustee donald solsby's wife, zoe solsby, is a consultant to the foundation. Mrs. Solsby received compensation of approximately $84,000 for the year ended june 30,2025.

Statement Note 2

Note (2) - fundraisersschedule g - part ii fundraisers - the foundation holds an annual natalie's wish online fundraiser during the month of april. Income from the fundraiser is in the form of charitable contributions. There are no direct costs for the fundraiser.

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IRS990/Desc0EDUCATIONThe Cystinosis Research Foundation is dedicated to educating the cystinosis community, the public and the medical community about cystinosis to ensure early diagnosis and immediate and proper treatment.NATALIES WISHNatalies wish, To have my disease go away forever, was the driving force and inspiration that led to the establishment of the Cystinosis Research Foundation (CRF) in 2003. We knew at that moment that we needed to make every effort to make Natalies wish and the wish of others with cystinosis a reality.HISTORY AND RESEARCHCystinosis is a rare, metabolic, genetic disease that afflicts approximately 2,500 children and adults worldwide. CRF is increasingly focused on funding clinical and translational research which is crucial to finding new treatments and a cure for cystinosis. CRF is committed to prioritizing and aggressively supporting research that has the potential to significantly improve the quality of life for children and adults with cystinosis. RESEARCH GIVES US HOPEWe firmly believe that funding and supporting research gives our community hope for a brighter future for those living with cystinosis. Hope allows us to live with cystinosis until the day a cure is found. Since 2003, the Cystinosis Research Foundation (CRF) has raised over $73 million and has become the worlds leading fund provider of cystinosis research. CRF has strategically and aggressively invested millions of dollars into the CRF research program creating a thriving and collaborative global research community that has changed the course of cystinosis. From the beginning, all CRF operating costs have been privately underwritten, so 100 percent of all donations received by CRF go to support cystinosis research. CRF HAS CREATED A CONTINUOUS CYCLE OF RESEARCH STUDIES BY SEEKING NEW RESEARCH APPLICATIONS TWICE A YEAR. We are pleased to announce that during the 12-month period ending June 30, 2025, CRF announced seven new grantS, AND GRANT PAYMENTS totaling $2,326,589,TO bring us that much closer to better treatments and a cure. RESEARCH PROGRESSFROM THE START OF THE FOUNDATION, WE HAVE UNDERSTOOD THAT FUNDING BASIC AND BENCH RESEARCH WAS important to understanding the cystinosis. Over the years, as discoveries were made in the lab, CRF began funding clinical research, and now we are translating the DATA FROM the clinical studies To the patients. Our strategy of providing seed money to talented researchers has been successful. Our first project involved funding researchers who were focused on a new treatment. CRF provided grants that funded every bench and clinical trial that led to the discovery of a delayed-release form of the life-saving medication for cystinosis. That medication, Procysbi was approved by the FDA on April 30, 2013, and is considered the most significant advancement in the treatment of cystinosis in 30 years. In 2007, CRF began funding Dr. Stphanie Cherqui, at UC San Diego who was focused on stem cell and gene therapy research. As a direct result of CRFs early and continuous funding, in December 2018, the FDA approved a clinical trial to assess the efficacy and safety of a stem cell and gene therapy treatment for cystinosis patients. In October 2019, the first cystinosis patient received the stem cell gene therapy treatment. In 2020, two patients received the therapy. In November 2021, the fourth patient received the treatment and in March 2022, the fifth patient received the treatment. The sixth and final patient in Phase I/II of the clinical trial was treated in October 2022. THE GRANTS AWARDED TO DR. CHERQUI FOR HER STEM CELL WORK HAVE BEEN LEVERAGED BY MULTI-MILLION-DOLLAR GRANTS FROM OTHER FUNDING AGENCIES. IF THIS TREATMENT WORKS, IT COULD STOP THE PROGRESSION OF CYSTINOSIS OR BE THE CURE FOR CYSTINOSIS.Since cystinosis is a systemic disease and affects every cell, CRF has targeted multiple areas of research including kidney disease, muscle wasting, neurological issues, corneal cystinosis, and stem cell and gene the
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