Civic Intelligence

Cystinosis Research Network Inc

EIN 04-3323789 • 501(c)3 • Lake Forest, IL

Profile

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.

PO Box 702Lake Forest, IL 60045

www.cystinosis.org

Siviq Scores

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

Liabilities / Assets

64th percentile

0.07x

Higher debt load relative to assets than 64% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Liabilities / Revenue

65th percentile

0.07x

Higher debt load relative to revenue than 65% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Net Margin

88th percentile

45%

Higher net margin than 88% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Top Officer Pay

Score unavailable

No value available

No filing with officer rows is available for this organization yet.

Asset Growth

94th percentile

103%

Faster asset growth than 94% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Annualized from 2023 to 2024

Revenue Growth

73rd percentile

26%

Faster revenue growth than 73% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets64th percentile

Assets

Up

$604,986

Up $306,696 (+103%) from 2023

Liabilities

Up

$43,460

Up $17,375 (+67%) from 2023

Net Assets

Up

$561,526

Up $289,321 (+106%) from 2023

Operations
Liabilities / Revenue65th percentileNet Margin88th percentile

Revenue

Up

$646,021

Up $134,970 (+26%) from 2023

Expenses

Down

$356,700

Down $333,837 (-48%) from 2023

Net Income

Up

$289,321

Up $468,807 (+261%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth94th percentile

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

$800K$600K$400K$200K$0Assets 2010: $490,728Liabilities 2010: $136,804Net Assets 2010: $353,9242010Assets 2011: $214,241Liabilities 2011: $23,606Net Assets 2011: $190,6352011Assets 2012: $128,654Liabilities 2012: $35,783Net Assets 2012: $92,8712012Assets 2013: $198,264Liabilities 2013: $100,310Net Assets 2013: $97,9542013Assets 2014: $430,403Liabilities 2014: $38,144Net Assets 2014: $392,2592014Assets 2015: $331,344Liabilities 2015: $14,843Net Assets 2015: $316,5012015Assets 2016: $480,370Liabilities 2016: $33,096Net Assets 2016: $447,2742016Assets 2017: $205,041Liabilities 2017: $28,112Net Assets 2017: $176,9292017Assets 2018: $391,665Liabilities 2018: $46,239Net Assets 2018: $345,4262018Assets 2019: $215,527Liabilities 2019: $30,528Net Assets 2019: $184,9992019Assets 2020: $540,033Liabilities 2020: $28,326Net Assets 2020: $511,7072020Assets 2021: $679,647Liabilities 2021: $36,787Net Assets 2021: $642,8602021Assets 2022: $505,368Liabilities 2022: $53,677Net Assets 2022: $451,6912022Assets 2023: $298,290Liabilities 2023: $26,085Net Assets 2023: $272,2052023Assets 2024: $604,986Liabilities 2024: $43,460Net Assets 2024: $561,5262024

Highlighted filing

2024

Assets$604,986
Liabilities$43,460
Net Assets$561,526
Open 2024 Filing

Operations Trend

Revenue Growth73rd percentile

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

$1.0M$500K$0-$500KExpenses 2010: $411,3072010Expenses 2011: $493,2762011Revenue 2012: $370,984Expenses 2012: $468,748Net Income 2012: -$97,7642012Revenue 2013: $510,293Expenses 2013: $505,210Net Income 2013: $5,0832013Revenue 2014: $652,835Expenses 2014: $358,530Net Income 2014: $294,3052014Revenue 2015: $617,319Expenses 2015: $693,077Net Income 2015: -$75,7582015Revenue 2016: $412,415Expenses 2016: $281,642Net Income 2016: $130,7732016Revenue 2017: $395,493Expenses 2017: $665,838Net Income 2017: -$270,3452017Revenue 2018: $537,875Expenses 2018: $369,378Net Income 2018: $168,4972018Revenue 2019: $408,570Expenses 2019: $568,997Net Income 2019: -$160,4272019Revenue 2020: $527,497Expenses 2020: $200,789Net Income 2020: $326,7082020Revenue 2021: $543,210Expenses 2021: $412,057Net Income 2021: $131,1532021Revenue 2022: $346,267Expenses 2022: $537,436Net Income 2022: -$191,1692022Revenue 2023: $511,051Expenses 2023: $690,537Net Income 2023: -$179,4862023Revenue 2024: $646,021Expenses 2024: $356,700Net Income 2024: $289,3212024

Highlighted filing

2024

Revenue$646,021
Expenses$356,700
Net Income$289,321
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Facts available. Structured filing facts are available, but richer extracted sections are limited.

Open filing
Assets
$604,986
Liabilities
$43,460
Net assets
$561,526
Revenue
$646,021
Expenses
$356,700
Net income
$289,321
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$6.05$0.43$5.62$6.46$3.57$2.89
2023Detailed filing. Detailed filing data is available for this year.$2.98$0.26$2.72$5.11$6.91$1.79
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$5.05$0.54$4.52$3.46$5.37$1.91
2021XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$6.80$0.37$6.43$5.43$4.12$1.31
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$5.40$0.28$5.12$5.27$2.01$3.27
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.16$0.31$1.85$4.09$5.69$1.60
2018Detailed filing. Detailed filing data is available for this year.$3.92$0.46$3.45$5.38$3.69$1.68
2017XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.05$0.28$1.77$3.95$6.66$2.70
2016XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$4.80$0.33$4.47$4.12$2.82$1.31
2015Detailed filing. Detailed filing data is available for this year.$3.31$0.15$3.17$6.17$6.93$0.76
2014Detailed filing. Detailed filing data is available for this year.$4.30$0.38$3.92$6.53$3.59$2.94
2013Detailed filing. Detailed filing data is available for this year.$1.98$1.00$0.98$5.10$5.05$0.05
2012Summary only. Only limited summary data is available for this year.$1.29$0.36$0.93$3.71$4.69$0.98
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.14$0.24$1.91$4.93
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$4.91$1.37$3.54$4.11
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Jun 30, 2025
Return Version
2024v5.0
Gross Receipts
$646,021
Mission and Program Overview

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.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$240,000$473,564▲ $233,564
Cash and Non-Interest-Bearing Accounts$58,290$131,422▲ $73,132
Total Assets$298,290$604,986▲ $306,696
Liabilities
Accounts Payable and Accrued Expenses$14,395$30,992▲ $16,597
Deferred Revenue$11,690$12,468▲ $778
Total Liabilities$26,085$43,460▲ $17,375
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$206,837$514,557▲ $307,720
Net Assets With Donor Restrictions$65,368$46,969▼ $18,399
Total Net Assets Fund Balance$272,205$561,526▲ $289,321
Total Liabilities and Net Assets / Fund Balance$298,290$604,986▲ $306,696

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings-$28,600$28,600
Compensation and Service Providers
Top Officer PayScore unavailable

Board Members and Trustees

NameTitle
Johnathan DicksPresident, V
Carol HughesDirector
Gail PottsDirector
Heather Fields RothrockDirector
Herberth SiglerDirector
Jen WymanDirector
Megan MorrillDirector
Terri SchleuderDirector
Clair JohnstoneExecutive Di
Karen GledhillSecretary
Tim WymanTreasurer
Marybeth KrummenackerVP Education
Chelsea MeschkeVP Family Su
Kristina SevelVP Research
Revenue and Support

Revenue Composition

Contributions and Grants
$632,738
Program Service Revenue
$0
Investment Income
$13,283
Other Revenue
$0
All Other Contributions
$632,738
Change in Net Assets
$289,321

Audited Revenue Reconciliation

Revenue per Audited Statements
$646,021
Total Revenue per Audited Statements
$646,021
Total Revenue per Form 990
$646,021
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$291,712
Grants and Similar Amounts Paid$64,988
Total Fundraising Expense$16,350
Professional Fundraising Fees$0
Salaries, Compensation, and Employee Benefits$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Conferences and Meetings$107,104-$8,062$115,166
Fees for Services Other$27,500$53,221$4,958$85,679
Grants to Domestic Orgs$36,666--$36,666
Foreign Grants$19,125--$19,125
Fees for Services Accounting-$15,015-$15,015
Other Expenses$12,000$4,023$3,277$12,000
Grants to Domestic Individuals$9,197--$9,197
Advertising$4,068-$53$4,121
Insurance-$794-$794
Total Functional Expenses$267,297$73,053$16,350$356,700

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$356,700
Total Expenses per Audited Statements$356,700
Total Expenses per Form 990$356,700
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
The Regents of the University of CALos Angeles, CA501c3Research Grant$36,666

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
Europe - Albania, Andorra, Austria, BelgGrantmaking----
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
No
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, Page 6, Part VI, Line 2

“Tim wyman jen wyman family relationship”

Form 990, Page 6, Part VI, Line 11B

“The draft copy of form 990 is reviewed by the treasurer and requests to review will be made to the executive committee prior to signature by the treasurer or executive director. A copy of the final form 990 is provided to all board members prior to filing.”

Form 990, Page 6, Part VI, Line 12C

“On an annual basis, the organization discusses the existing policy with the board members and asks that all members disclose any relationships or situations that may go against this policy.”

Form 990, Page 6, Part VI, Line 19

“All available upon request of executive director.”

Filing and Contact Details

Filer

Filer Name
Cystinosis Research Network Inc
EIN
04-3323789
Phone
8477350471
Address
PO BOX 702, LAKE FOREST, IL 60045

Signing Officer

Name
Clair Johnstone
Title
Executive Director
Phone
8477350471
Signed
2025-06-30

Organization Details

Principal Officer
Clair Johnstone
Formed
1996
Legal Domicile
Ma
Voting Board Members
13
Independent Board Members
13
Employees
0
Volunteers
20

Preparer

Firm
Mattina Kent & Gibbons Pc
Address
1214 N MAIN ST, ROCHESTER, MI 48307
Preparer
John Coombs CPA
Phone
2486019500
Supplemental Narrative

Additional Explanations

FORM 990 - ORGANIZATION'S 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.”

Form 990, Part IX, Line 11G

“Operations:independent contra 27,500 53,221 4,958”

Raw XML AppendixShowing 400 of 437 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/PrincipalOfficerNm0CLAIR JOHNSTONE
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IRS990/ProgSrvcAccomActy2Grp/Desc0THE ORGANIZATION RAISES AWARENESS AND REINFORCES STRONG RELATIONSHIPS THROUGH REPRESENTATION AT NATIONAL MEDICAL CONFERENCES, AFFILIATION WITH OTHER ORGANIZATIONS, PUBLICATION OF PERIODIC NEWSLETTERS AND AWARDS OR EDUCATIONAL SCHOLARSHIPS TO INDIVIDUALS WITH CYSTINOSIS AND THEIR SIBLINGS.
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IRS990/ProgSrvcAccomActy3Grp/Desc0THE ORGANIZATION PROVIDES INFORMATION AND OPPORTUNITIES TO NETWORK FOR INDIVIDUALS WITH CYSTINOSIS AND THEIR FAMILIES THROUGH PARTICIPATION IN A BIENNIAL CONFERENCE ON CYSTINOSIS. IT ALSO SUPPORTS NEWLY DIAGNOSED AND EXISTING FAMILIES BY PROVIDING ACCESS TO WORLD EXPERTS VIA ADVISORY BOARDS, MODERATION OF AN EMAIL SUPPORT GROUP AND INFORMATION PACKETS.
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IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTxt0EUROPE - ALBANIA, ANDORRA, AUSTRIA, BELG
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/TypeOfActivitiesConductedTxt0GRANTMAKING
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IRS990ScheduleF/GrantsToOrgOutsideUSGrp/MannerOfCashDisbursementTxt0WIRE TRANSFER
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt0RESEARCH
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/RegionTxt0EUROPE
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IRS990ScheduleF/SupplementalInformationDetail/ExplanationTxt0ALL GRANTS ARE REVIEWED BY A SCIENTIFIC REVIEW BOARD OF PHYSICIANS FAMILIAR WITH CYSTINOSIS. PER GRANT AGREEMENT, RESEARCHERS ARE TO PROVIDE PERIODIC PROGRESS REPORTS SHOWING RESEARCH PROGRESS AND EXPENSES INCURRED THUS FAR.
IRS990ScheduleF/SupplementalInformationDetail/ExplanationTxt1EUROPE - ALBANIA, ANDORRA, AUSTRIA, BELG 0 0
IRS990ScheduleF/SupplementalInformationDetail/FormAndLineReferenceDesc0SCHEDULE F, PAGE 1, PART I, LINE 2
IRS990ScheduleF/SupplementalInformationDetail/FormAndLineReferenceDesc1SCHEDULE F, PAGE 1, PART I, LINE 3
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IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt0RESEARCH GRANT
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0THE REGENTS OF THE UNIVERSITY OF CA
IRS990ScheduleI/RecipientTable/RecipientEIN0943067788
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt0PO BOX 748872
IRS990ScheduleI/RecipientTable/USAddress/CityNm0LOS ANGELES
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IRS990ScheduleI/SupplementalInformationDetail/ExplanationTxt0ALL GRANTS ARE REVIEWED BY A SCIENTIFIC REVIEW BOARD OF PHYSICIANS FAMILIAR WITH CYSTINOSIS. PER GRANT AGREEMENT, RESEARCHERS ARE TO PROVIDE PERIODIC PROGRESS REPORTS SHOWING RESEARCH PROGRESS AND EXPENSES INCURRED THUS FAR.
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IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0THE 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.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1TIM WYMAN JEN WYMAN FAMILY RELATIONSHIP
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2THE DRAFT COPY OF FORM 990 IS REVIEWED BY THE TREASURER AND REQUESTS TO REVIEW WILL BE MADE TO THE EXECUTIVE COMMITTEE PRIOR TO SIGNATURE BY THE TREASURER OR EXECUTIVE DIRECTOR. A COPY OF THE FINAL FORM 990 IS PROVIDED TO ALL BOARD MEMBERS PRIOR TO FILING.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3ON AN ANNUAL BASIS, THE ORGANIZATION DISCUSSES THE EXISTING POLICY WITH THE BOARD MEMBERS AND ASKS THAT ALL MEMBERS DISCLOSE ANY RELATIONSHIPS OR SITUATIONS THAT MAY GO AGAINST THIS POLICY.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4ALL AVAILABLE UPON REQUEST OF EXECUTIVE DIRECTOR.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt5OPERATIONS:INDEPENDENT CONTRA 27,500 53,221 4,958
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0FORM 990 - ORGANIZATION'S MISSION
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