Form 990 for tax year 2022
Filed by SIEGEL RARE NEUROIMMUNE ASSOCIATION.
Totals
- Total revenue
- $1,218,351
- Total expenses
- $1,096,315
- Contributions and grants received
- $1,208,273
- Grants paid
- $87,663
- Program service revenue
- $27,714
- Investment income
- -$17,636
- Other revenue
- $0
- Total assets, end of year
- $1,636,191
- Total liabilities, end of year
- $85,987
- Net assets or fund balances, end of year
- $1,550,204
- Program services expenses (Part IX)
- $960,669
- Management and general expenses
- $98,054
- Fundraising expenses
- $37,592
- Program service expenses (Part III)
- $960,669
Program services were 87.6% 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
$1,208,273
-
1g · Noncash contributions included above
$38,021
-
2a · Program service revenue: CDC SUBCONTRACT AGREEMENT AFM AWARENESS
total $27,714 · related or exempt $27,714 · unrelated business $0 · excluded $0
-
2f · All other program service revenue
total $0 · related or exempt $0 · unrelated business $0 · excluded $0
-
3 · Investment income
total -$17,636 · related or exempt $0 · unrelated business $0 · excluded -$17,636
-
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: contributions included on line 1c
$0
-
11e · Other revenue, total
$0
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $87,663 · program services $87,663
-
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 $87,545 · program services $70,036 · management and general $10,943 · fundraising $6,566
-
6 · Compensation of disqualified persons
total $0 · program services $0 · management and general $0 · fundraising $0
-
7 · Other salaries and wages
total $361,112 · program services $325,131 · management and general $22,998 · fundraising $12,983
-
8 · Pension plan contributions
total $24,000 · program services $21,175 · management and general $1,793 · fundraising $1,032
-
9 · Other employee benefits
total $46,464 · program services $41,323 · management and general $3,272 · fundraising $1,869
-
10 · Payroll taxes
total $34,971 · program services $30,814 · management and general $2,638 · fundraising $1,519
-
11a · Fees: management
total $0 · program services $0 · management and general $0 · fundraising $0
-
11b · Fees: legal
total $0 · program services $0 · management and general $0 · fundraising $0
-
11c · Fees: accounting
total $10,750 · program services $0 · management and general $10,750 · fundraising $0
-
11d · Fees: lobbying
total $0 · program services $0 · management and general $0 · fundraising $0
-
11e · Fees: professional fundraising services
total $0 · fundraising $0
-
11f · Fees: investment management
total $0 · program services $0 · management and general $0 · fundraising $0
-
11g · Fees: other
total $109,627 · program services $100,953 · management and general $0 · fundraising $8,674
-
12 · Advertising and promotion
total $0 · program services $0 · management and general $0 · fundraising $0
-
13 · Office expenses
total $1,089 · program services $0 · management and general $1,089 · fundraising $0
-
14 · Information technology
total $17,696 · program services $10,007 · management and general $6,345 · fundraising $1,344
-
15 · Royalties
total $0 · program services $0 · management and general $0 · fundraising $0
-
16 · Occupancy
total $0 · program services $0 · management and general $0 · fundraising $0
-
17 · Travel
total $5,449 · program services $5,126 · management and general $323 · fundraising $0
-
18 · Travel or entertainment for public officials
total $0 · program services $0 · management and general $0 · fundraising $0
-
19 · Conferences, conventions and meetings
total $102,243 · program services $102,243 · management and general $0 · fundraising $0
-
20 · Interest
total $0 · program services $0 · management and general $0 · fundraising $0
-
21 · Payments to affiliates
total $0 · program services $0 · management and general $0 · fundraising $0
-
22 · Depreciation, depletion and amortization
total $4,178 · program services $0 · management and general $4,178 · fundraising $0
-
23 · Insurance
total $5,842 · program services $0 · management and general $5,842 · fundraising $0
-
24a · Other expenses: EDUCATION AND SUPPORT, INC. CAMP
total $155,766 · program services $155,766 · management and general $0 · fundraising $0
-
24b · Other expenses: LICENSES AND FEES - STATE AND CORP REGISTRATIONS
total $17,383 · program services $1,046 · management and general $16,337 · fundraising $0
-
24c · Other expenses: BANK FEES
total $11,546 · program services $0 · management and general $11,546 · fundraising $0
-
24d · Other expenses: PRINTING AND POSTAGE
total $12,991 · program services $9,386 · management and general $0 · fundraising $3,605
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
end of year $0
-
2 · Savings and temporary cash investments
beginning of year $1,342,331 · end of year $1,469,263
-
3 · Pledges and grants receivable
beginning of year $59,399 · end of year $13,694
-
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
$24,094
-
10b · Land, buildings and equipment: accumulated depreciation
$12,669
-
10c · Land, buildings and equipment, net
beginning of year $9,825 · end of year $11,425
-
11 · Investments: publicly traded securities
beginning of year $127,202 · end of year $141,809
-
12 · Investments: other securities
beginning of year $0 · end of year $0
-
13 · Investments: program-related
beginning of year $0 · end of year $0
-
14 · Intangible assets
end of year $0
-
15 · Other assets
end of year $0
-
17 · Accounts payable and accrued expenses
beginning of year $42,324 · end of year $30,222
-
18 · Grants payable
end of year $0
-
19 · Deferred revenue
beginning of year $68,265 · end of year $55,765
-
20 · Tax-exempt bond liabilities
end of year $0
-
21 · Escrow or custodial account liability
end of year $0
-
22 · Loans and payables to officers and key people
end of year $0
-
23 · Secured mortgages and notes payable
end of year $0
-
24 · Unsecured notes and loans payable
end of year $0
-
27 · Net assets without donor restrictions
beginning of year $1,031,082 · end of year $1,252,167
-
28 · Net assets with donor restrictions
beginning of year $397,086 · end of year $298,037
Mission and programs · 2022
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 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. Our goal is to continue providing this valuable resource to our community for many years to come.
Expenses $717,625 · Grants $15,000
-
The SRNA partners with the Center for Courageous Kids (CCK) in Scottsville, KY to hold an annual summer camp for children (ages 5 - 17) and their families who have been impacted by these 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 $70,702 · Revenue $25,588
-
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 $172,342 · Grants $72,663 · Revenue $105,390
As filed on the 2022 return.
Listed in Part VII
-
Chitra Krishnan
Executive Director
- Total calculated
- $87,545
- From this org
- $87,545
- From related orgs
- $0
- Other
- $0
- Hours/week
- 30
-
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
- 3
-
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
- 3
-
Peter C Johnson
Director
- Total calculated
- $0
- Hours/week
- 3
-
Dennis Wolfe
Director
- Total calculated
- $0
- Hours/week
- 3
-
Lana Harder
Director
- Total calculated
- $0
- Hours/week
- 5
-
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
-
MASSACHUSETTS GENERAL HOSPITAL
$40,000
Acquired samples of CSF and blood from TM,MS,NMO,MOG patients and healthy controls. Using artificially produced exosomes in culture from cell lines , she successfully improved on a protocol to purify and characterize exosomes. These exosomes are within a specific size range and contain the markers of exosomes (tetraspanins). From MOG-expressing HEK cells, she can identify MOG protein within the exosomes and from AQP4-expressing HEK cells, she can identify AQP4 on the membranes of exosomes.
-
UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER
$12,500
Grant will be used to assess condition specific knowledge of patients with rare neuroimmue disorders
Provenance
- Return type
- form_990
- Tax year
- 2022
- Filed
- 5 October 2023
- IRS schema version
- 2022v5.0
- Source object
- 202322789349301752
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