Siegel Rare Neuroimmune Association

Nonprofit profile at a glance

EIN
911780467
IRS 990 coverage
2011–2024
Forms available
Form 990 2024
Location
Powell, OH, USA
Phone
8553803330
Rating
75
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Voluntary Health Associations & Medical Disciplines N.E.C.

Official website

Reported finances

Revenue
$1,493,618
Expenses
$1,614,877
Assets
$1,638,076
Liabilities
$164,084

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

17 people listed

Executive titles in this filing

  • Chitra Krishnan (Executive Director)
  • Sanford J Siegel (President)
  • Linda Malecky (Treasurer, Vice President)

Highest reported compensation

  • Chitra Krishnan (Executive Director): $143,388 total reported compensation
  • Gabrielle deFiebre (Director of Research and Programs): $116,865 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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.

What it reported doing in 2024

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.

Operating model

Revenue model
Donor-supported. 94% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 87% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 85
  • Transparency & Controls: 67
  • Accountability: 73
  • Sustainability: 29
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 93.3%; rating input score 93
  • Program expense ratio: 85.8%; rating input score 86
  • Fundraising efficiency: $11.15 raised per $1 spent on fundraising; rating input score 41; 41st percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.3%; rating input score 93; 22nd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Scored; rating input score 0
  • Grant itemization coverage: 77.5%; rating input score 78; 34th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 68.8%; rating input score 69; 14th percentile among comparable filings
  • Governance controls: 7 of 9 controls in place; rating input score 78
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -8.1%; rating input score 19; 19th percentile among comparable filings
  • Total-asset coverage ratio: 1.01; rating input score 43; 43rd percentile among comparable filings
  • Liabilities to assets ratio: 0.1; rating input score 42; 42nd percentile among comparable filings
  • Officer compensation ratio: 16.1%; rating input score 21; 21st percentile among comparable filings

Growth

  • Program expense growth: 11.3% per year; rating input score 100; 66th percentile among comparable filings
  • Revenue growth: 12.5% per year; rating input score 100; 73rd percentile among comparable filings
  • Asset growth: 9% per year; rating input score 100; 55th percentile among comparable filings

Details

  • Where the money goes: 93.3% of revenue deployed · 85.8% of spending went to programs
  • Governance: 11 of 16 board members independent · 7 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $1.4M in reported program spending
  • Leadership: top reported pay $143K · 17 people listed
  • Consistency: 34 of 35 current checks pass · 1 finding to review
  • Schedules: 7 filed schedules · includes major donors, foreign activity, and grants
  • Filing history: 12 filing years from 2011 to 2024
  • Contacts: How to reach this organization
  • Money network: 5 filed money-flow records
  • Related organizations: 3 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Foreign activity oversight scored 0/100.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 41/100.
  • High — Sustainability: Operating margin scored 19/100.
  • Review — Accountability: Governance controls: 2 of 9 not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 43/100.
  • High — Sustainability: Officer compensation ratio scored 21/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Moderate — Sustainability: Liabilities to assets ratio scored 42/100.