SIEGEL RARE NEUROIMMUNE ASSOCIATION

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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

Sanford J Siegel

Phone

8553803330

Tax Period

2023-01-01 to 2023-12-31

SIEGEL RARE NEUROIMMUNE ASSOCIATION, founded in 1996, is a community nonprofit in the Diseases & Disorders sector that reported $1.3M in total revenue in fiscal year 2023. Expenses of $1.2M left a modest 4% surplus.

Mission

TO SUPPORT AND ADVOCATE FOR INDIVIDUALS AND THEIR FAMILIES DIAGNOSED WITH RARE NEUROIMMUNE DISORDERS OF THE CENTRAL NERVOUS SYSTEM; TO PROMOTE AWARENESS AND TO EMPOWER PATIENTS, FAMILIES, CLINICIANS AND SCIENTISTS THROUGH EDUCATION PROGRAMS AND PUBLICATIONS AND TO ADVANCE THE SCIENTIFIC UNDERSTANDING OF AND THERAPY DEVELOPMENT FOR THESE RARE DISORDERS BY SUPPORTING THE TRAINING OF CLINICIANS-SCIENTISTS DEDICATED TO THESE RARE DISORDERS AND BY SUPPORTING BASIC AND CLINICAL RESEARCH. OUR GOAL IS TO IMPROVE THE QUALITY OF LIFE OF INDIVIDUALS WITH RARE NEUROIMMUNE DISORDERS.

Program Service Accomplishments

Program 1

Expenses: $780,050 Revenue: $0

The SRNA maintains an extensive website with educational materials that include specific symptom and condition information for rare neuroimmunologic diseases; podcasts with physicians, blogs written by medical professionals as well as SRNA members; and archives of all past magazines. The website also facilitates support between patients and their families through support groups, peer connect programs and social media contacts. In addition, the SRNA holds an annual symposium to bring together individuals diagnosed with rare neuroimmune disorders and the clinicians and researchers that focus on these disorders. This event is the only one of its kind.The SRNA publishes an annual report that is distributed to its membership and details accomplishments and financial information. Regular updates that relate information about new treatments and research are also included. SRNA introduced the Online Learning Program, an initiative that offers online micro-courses specifically tailored for individuals with ADEM, AFM, MOGAD, NMOSD, ON, and TM, reflecting our ongoing commitment to providing essential knowledge and support to those impacted by these conditions. Our goal is to continue providing this valuable resource to our community for many years to come.

Program 2

Expenses: $108,190 Revenue: $16,837

The SRNA partners with Morgans Wonderland Camp to hold an annual summer camp for children (ages 5 - 17) and their families who have been impacted by rare neuroimmunologic disorders. The entire week of camp is offered to these children and their families free of charge and allows these children to experience the joys of camp and connect with others who experience the same symptoms and conditions.

Program 3

Expenses: $197,014 Revenue: $182,664

The SRNA provides research grants to medical and other institutions for work on understanding of treatments for these neuroimmunologic disorders. The SRNA's James T. Lubin Fellowship program supports the post-residency training of a clinician at an academic medical facility, who is committed to a career in academic medicine with a specialization in rare neuroimmunologic diseases and research. The SRNA maintains a Registry to understand people's experiences with rare neuroimmune disorders. The SRNA is also supporting the first study to investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells in Transverse Myelitis and the Progress Grant for NMOSD.

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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 (2023)

Revenue Breakdown

Contributions & Grants $1,222,107

Program Service Revenue $0

Investment Income $48,161

Other Revenue $0

TOTAL REVENUE $1,270,268

Expense Breakdown

Grants Paid $105,942

Salaries & Benefits $602,681

Fundraising Expenses $51,558

Program Expenses $1,085,254

Other Expenses $516,598

TOTAL EXPENSES $1,225,221

Year-over-Year Comparison

	2023	2022	Change
Revenue	$1,270,268	$1,218,351	+0.0%
Expenses	$1,225,221	$1,096,315	+0.1%
Net Income	$45,047	$122,036	-0.6%

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

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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

Volunteers

100

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

$102,113

Key Employees

$211,215

Highest Compensated

reported

Name	Title	Hours/Week	Role	Reportable Comp	Other Comp	Total
Gabrielle deFiebre	Director of Research and Programs	40	Key Emp Highest	$103,907	$5,195	$109,102
Chitra Krishnan	Executive Director	30.00	Director Key Emp Highest	$97,250	$4,863	$102,113
Lana Harder	Director	5	Director	$0	$0	$0
Sanford J Siegel	President	20	Officer Director	$0	$0	$0
Deborah Capen	Secretary	20	Officer Director	$0	$0	$0
Linda Malecky	Treasurer, Vice President	20	Officer Director	$0	$0	$0
Bruce L Downey	Director	3	Director	$0	$0	$0
Benjamin M Greenberg MD	Director	5	Director	$0	$0	$0
Douglas A Kerr MD PHD	Director	5	Director	$0	$0	$0
Carlos A Pardo-Villamizar MD	Director	5	Director	$0	$0	$0
Barbara Sattler	Director	5	Director	$0	$0	$0
Jason Robbins	Director	5	Director	$0	$0	$0
Peter C Johnson	Director	3	Director	$0	$0	$0
Dennis Wolfe	Director	3	Director	$0	$0	$0
James T Lubin	Executive Committee Member	20	Officer Director	$0	$0	$0
Dave Evans	Director	3	Director	$0	$0	$0
Michael Levy	Director	5	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	No data	No data	No data	No data
2023	$1,270,268	$1,225,221	$1,723,037	$45,047
2022	$1,218,351	$1,096,315	$1,636,191	$122,036
2021	$1,415,891	$683,121	$1,538,757	$732,770
2020	$752,124	$577,003	$776,844	$175,121
2019	$906,729	$966,213	$675,082	$-59,484