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Siegel Rare Neuroimmune Association

EIN 91-1780467 · Powell, OH

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthGood82 out of 100GovernanceGood85 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

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.

Income
$1.5 million
Spending
$1.6 million
Spent on programs
86%
Reserves
7.8 months of spending
Largest source of income
donations and private grants, 94%
Employees
8
Volunteers
100
Highest pay
$143,388, executive director

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 82 out of 100. Higher than 52% of charities in its peer group (diseases, $1m to $10m).

  • Reserves

    28 of 35

    Spendable reserves would cover 7.8 months of spending.

  • Debt

    20 of 20

    It owes 10% of what it owns.

  • Living within its means

    4 of 15

    Spending exceeded income by 8% of income.

  • Income trend

    15 of 15

    Income rose 18% on the year before.

  • Spending floor

    15 of 15

    86% of spending went to programs and raising each dollar of donations cost 9 cents.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Good: 85 out of 100. Higher than 33% of charities in its peer group (diseases, $1m to $10m).

  • Independent board

    25 of 25

    11 of 16 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    0 of 8

    Reports no written whistleblower policy.

  • Record keeping policy

    0 of 7

    Reports no written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $1.0 million spent. 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.
  2. $132,570 spent. 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.
  3. $223,887 spent. 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.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2024.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since September 1997.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.