CYSTINOSIS RESEARCH NETWORK INC

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Financial Vulnerability Assessment (Tuckman-Chang)

4 risk indicators measuring financial stability and operational resilience

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Financial Trends

Organization Details

Formation Year

1996

Legal Domicile

Principal Officer

CLAIR JOHNSTONE

Phone

8477350471

Tax Period

2024-01-01 to 2024-12-31

CYSTINOSIS RESEARCH NETWORK INC, founded in 1996, is a small nonprofit in the Education sector that reported $646K in total revenue in fiscal year 2024. Revenue surged 26% from the prior year, signaling strong growth momentum. The organization ran a surplus of $289K, a strong 45% operating margin.

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.

Program Service Accomplishments

Program 1

Expenses: $55,791

THE ORGANIZATION ESTABLISHES AND FUNDS FELLOWSHIPS AND RESEARCH GRANTS FOCUSING ON CLINICAL AND RESEARCH TRAINING IN CYSTINOSIS.

Program 2

Expenses: $187,667

THE 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.

Program 3

Expenses: $23,839

THE 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...

THE 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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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $632,738

Program Service Revenue $0

Investment Income $13,283

Other Revenue $0

TOTAL REVENUE $646,021

Expense Breakdown

Grants Paid $64,988

Salaries & Benefits $0

Fundraising Expenses $16,350

Program Expenses $267,297

Other Expenses $291,712

TOTAL EXPENSES $356,700

Year-over-Year Comparison

	2024	2023	Change
Revenue	$646,021	$511,051	+0.3%
Expenses	$356,700	$690,537	-0.5%
Net Income	$289,321	$-179,486	-2.6%

Key Indicators

✓ Grants to Organizations ✓ Grants to Individuals ✗ Lobbying ✗ Political Activity ✓ Foreign Activities ✗ Donor Advised Fund ✗ Schedule B Required

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Financial Health Indicators

Comprehensive financial analysis: Altman Z-Score, liquidity, solvency, sustainability, efficiency, and growth metrics

Financial Distress Indicator

Liquidity & Cash Position

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Altman Z-Score • Liquidity Ratios • Solvency Analysis • Growth Indicators • Efficiency Metrics

Governance

Voting Members

Independent Members

Employees

N/A

Volunteers

Governance Policies

✗ Conflict of Interest Policy

✗ Whistleblower Policy

✗ Document Retention Policy

Special Practices & Reported Activities

✗ Operated a School

✗ Operated a Hospital

✗ Provided First Class Travel

⚠ Reported Conflict of Interest

✗ Reported Asset Diversion

✗ Excess Benefit Transaction

✗ Made Political Expenditures

✗ Engaged in Lobbying

✗ Operated Donor Advised Fund

✗ Maintained Art Collections

✗ Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers

Total Directors

Key Employees

Highest Compensated

reported

Name	Title	Hours/Week	Role	Reportable Comp	Other Comp	Total
JOHNATHAN DICKS	PRESIDENT, V	16.00	Officer Director	$0	$0	$0
KAREN GLEDHILL	SECRETARY	2.00	Officer Director	$0	$0	$0
CAROL HUGHES	DIRECTOR	7.00	Director	$0	$0	$0
CLAIR JOHNSTONE	EXECUTIVE DI	4.00	Officer Director	$0	$0	$0
MARYBETH KRUMMENACKER	VP EDUCATION	4.00	Officer Director	$0	$0	$0
CHELSEA MESCHKE	VP FAMILY SU	2.00	Officer Director	$0	$0	$0
MEGAN MORRILL	DIRECTOR	3.00	Director	$0	$0	$0
GAIL POTTS	DIRECTOR	2.00	Director	$0	$0	$0
HEATHER FIELDS ROTHROCK	DIRECTOR	1.00	Director	$0	$0	$0
TERRI SCHLEUDER	DIRECTOR	1.00	Director	$0	$0	$0
KRISTINA SEVEL	VP RESEARCH	2.00	Officer Director	$0	$0	$0
HERBERTH SIGLER	DIRECTOR	1.00	Director	$0	$0	$0
JEN WYMAN	DIRECTOR	2.00	Director	$0	$0	$0
TIM WYMAN	TREASURER	1.00	Officer Director	$0	$0	$0

Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year	Revenue	Expenses	Assets	Net Income
2024	$646,021	$356,700	$604,986	$289,321
2023	$511,051	$690,537	$298,290	$-179,486
2022	$346,267	$537,436	$505,368	$-191,169
2021	$543,210	$412,057	$679,647	$131,153
2020	$527,497	$200,789	$540,033	$326,708
2019	$408,570	$568,997	$215,527	$-160,427
2018	$537,875	$369,378	$391,665	$168,497