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Nonprofiteer
← SIEGEL RARE NEUROIMMUNE ASSOCIATION

Form 990 for tax year 2024

Filed by SIEGEL RARE NEUROIMMUNE ASSOCIATION.

Totals

Total revenue
$1,493,618
Total expenses
$1,614,877
Contributions and grants received
$1,399,452
Grants paid
$177,374
Program service revenue
$0
Investment income
$92,764
Other revenue
$1,402
Total assets, end of year
$1,638,076
Total liabilities, end of year
$164,084
Net assets or fund balances, end of year
$1,473,992
Program services expenses (Part IX)
$1,386,316
Management and general expenses
$103,048
Fundraising expenses
$125,513
Program service expenses (Part III)
$1,386,316

Program services were 85.8% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1a · Federated campaigns

    $0

  • 1b · Membership dues

    $0

  • 1c · Fundraising events

    $0

  • 1d · Related organizations

    $0

  • 1e · Government grants (contributions)

    $0

  • 1f · All other contributions, gifts and grants

    $1,399,452

  • 1g · Noncash contributions included above

    $107,707

  • 3 · Investment income

    total $92,764 · related or exempt $0 · unrelated business $0 · excluded $92,764

  • 4 · Income from investment of tax-exempt bond proceeds

    total $0 · related or exempt $0 · unrelated business $0 · excluded $0

  • 5 · Royalties

    total $0 · related or exempt $0 · unrelated business $0 · excluded $0

  • 6c · Rental income or loss

    real property $0 · personal property $0

  • 7c · Gain or loss

    securities $0 · other assets $0

  • 8a · Fundraising events: gross income

    $0

  • 8a · Fundraising events: contributions included on line 1c

    $0

  • 8b · Fundraising events: direct expenses

    $0

  • 8c · Net income from fundraising events

    total $0 · unrelated business $0 · excluded $0

  • 11d · All other revenue

    total $1,402 · related or exempt $1,402 · unrelated business $0 · excluded $0

  • 11e · Other revenue, total

    $1,402

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $177,374 · program services $177,374

  • 2 · Grants to domestic individuals

    total $0 · program services $0

  • 3 · Grants to foreign organizations and individuals

    total $0 · program services $0

  • 4 · Benefits paid to or for members

    total $0 · program services $0

  • 5 · Compensation of officers, directors and key employees

    total $247,860 · program services $216,246 · management and general $15,807 · fundraising $15,807

  • 6 · Compensation of disqualified persons

    total $0 · program services $0 · management and general $0 · fundraising $0

  • 7 · Other salaries and wages

    total $363,851 · program services $335,643 · management and general $14,104 · fundraising $14,104

  • 8 · Pension plan contributions

    total $30,586 · program services $27,594 · management and general $1,496 · fundraising $1,496

  • 9 · Other employee benefits

    total $40,840 · program services $36,846 · management and general $1,997 · fundraising $1,997

  • 10 · Payroll taxes

    total $51,932 · program services $46,854 · management and general $2,539 · fundraising $2,539

  • 11c · Fees: accounting

    total $12,250 · program services $0 · management and general $12,250 · fundraising $0

  • 11g · Fees: other

    total $104,237 · program services $94,624 · management and general $0 · fundraising $9,613

  • 13 · Office expenses

    total $799 · program services $0 · management and general $758 · fundraising $41

  • 14 · Information technology

    total $30,871 · program services $27,549 · management and general $1,464 · fundraising $1,858

  • 17 · Travel

    total $20,736 · program services $19,656 · management and general $0 · fundraising $1,080

  • 18 · Travel or entertainment for public officials

    total $0 · program services $0 · management and general $0 · fundraising $0

  • 19 · Conferences, conventions and meetings

    total $155,621 · program services $155,621 · management and general $0 · fundraising $0

  • 22 · Depreciation, depletion and amortization

    total $5,346 · program services $0 · management and general $5,346 · fundraising $0

  • 23 · Insurance

    total $7,111 · program services $0 · management and general $7,111 · fundraising $0

  • 24a · Other expenses: Bank Fees

    total $24,051 · program services $0 · management and general $24,051 · fundraising $0

  • 24b · Other expenses: EDUCATION AND SUPPORT; CAMP

    total $248,309 · program services $248,309 · management and general $0 · fundraising $0

  • 24c · Other expenses: LICENSES AND FEES/STATE REG

    total $16,125 · program services $0 · management and general $16,125 · fundraising $0

  • 24d · Other expenses: FUNDRAISING EXPENSES

    total $76,978 · program services $0 · management and general $0 · fundraising $76,978

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $107,820 · end of year $168,468

  • 2 · Savings and temporary cash investments

    beginning of year $1,532,885 · end of year $1,420,557

  • 3 · Pledges and grants receivable

    beginning of year $54,862 · end of year $39,226

  • 4 · Accounts receivable

    beginning of year $0 · end of year $0

  • 5 · Loans and receivables from officers and key people

    beginning of year $0 · end of year $0

  • 6 · Loans and receivables from disqualified persons

    beginning of year $0 · end of year $0

  • 7 · Other notes and loans receivable

    beginning of year $0 · end of year $0

  • 8 · Inventories for sale or use

    beginning of year $0 · end of year $0

  • 9 · Prepaid expenses and deferred charges

    beginning of year $0 · end of year $0

  • 10a · Land, buildings and equipment: cost or other basis

    $31,947

  • 10b · Land, buildings and equipment: accumulated depreciation

    $22,122

  • 10c · Land, buildings and equipment, net

    beginning of year $10,804 · end of year $9,825

  • 11 · Investments: publicly traded securities

    beginning of year $16,666

  • 17 · Accounts payable and accrued expenses

    beginning of year $68,881 · end of year $86,472

  • 18 · Grants payable

    beginning of year $0 · end of year $0

  • 19 · Deferred revenue

    beginning of year $58,905 · end of year $77,612

  • 20 · Tax-exempt bond liabilities

    beginning of year $0 · end of year $0

  • 21 · Escrow or custodial account liability

    beginning of year $0 · end of year $0

  • 22 · Loans and payables to officers and key people

    beginning of year $0 · end of year $0

  • 23 · Secured mortgages and notes payable

    beginning of year $0 · end of year $0

  • 24 · Unsecured notes and loans payable

    beginning of year $0 · end of year $0

  • 27 · Net assets without donor restrictions

    beginning of year $1,253,653 · end of year $1,058,304

  • 28 · Net assets with donor restrictions

    beginning of year $341,598 · end of year $415,688

Mission and programs · 2024

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.

  • 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.

    Expenses $1,029,859

  • 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.

    Expenses $132,570 · Revenue $84,349

  • 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.

    Expenses $223,887 · Grants $177,374 · Revenue $267,237

As filed on the 2024 return.

Listed in Part VII

  • Chitra Krishnan

    Executive Director

    Total calculated
    $143,388
    From this org
    $136,560
    From related orgs
    $0
    Other
    $6,828
    Hours/week
    40

  • Gabrielle deFiebre

    Director of Research and Programs

    Total calculated
    $116,865
    From this org
    $111,300
    From related orgs
    $0
    Other
    $5,565
    Hours/week
    40

  • Lana Harder

    Director

    Total calculated
    $0
    Hours/week
    5

  • Sanford J Siegel

    President

    Total calculated
    $0
    Hours/week
    20

  • Deborah Capen

    Secretary

    Total calculated
    $0
    Hours/week
    20

  • Linda Malecky

    Treasurer, Vice President

    Total calculated
    $0
    Hours/week
    20

  • Bruce L Downey

    Director

    Total calculated
    $0
    Hours/week
    3

  • Benjamin M Greenberg MD

    Director

    Total calculated
    $0
    Hours/week
    5

  • Douglas A Kerr MD PHD

    Director

    Total calculated
    $0
    Hours/week
    5

  • Carlos A Pardo-Villamizar MD

    Director

    Total calculated
    $0
    Hours/week
    5

  • Barbara Sattler

    Director

    Total calculated
    $0
    Hours/week
    5

  • Jason Robbins

    Director

    Total calculated
    $0
    Hours/week
    8

  • Peter C Johnson

    Director

    Total calculated
    $0
    Hours/week
    3

  • Dennis Wolfe

    Director

    Total calculated
    $0
    Hours/week
    3

  • James T Lubin

    Executive Committee Member

    Total calculated
    $0
    Hours/week
    20

  • Dave Evans

    Director

    Total calculated
    $0
    Hours/week
    3

  • Michael Levy

    Director

    Total calculated
    $0
    Hours/week
    5

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those.

Grants on this return

  • University of Utah

    $50,000

    Fellowship award for salary, benefits and supplies for Fellow training in the clinical treatment of and research pertaining to rare neuroimmune disorders and a second grant to study the Effects of Social Determinants of Health Factors in Transverse Myelitis:Epidemiology of the National Veterans Health Administration Population

  • MASSACHUSETTS GENERAL HOSPITAL

    $47,500

    Fellowship award for salary, benefits and supplies for Fellow training in the clinical treatment of and research pertaining to rare neuroiummune diseases and a second grant to investigate Headache and Eye Pain Associated with Rare Neuroimmune Disorders

  • Johns Hopkins School of Medicine

    $40,000

    Fellowship award for salary, benefits and supplies for Fellow training in the clinical treatment of and research pertaining to rare neuroiummune diseases

Provenance

Return type
form_990
Tax year
2024
Filed
10 November 2025
IRS schema version
2024v5.0
Source object
202543149349304779

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