Siegel Rare Neuroimmune Association
- Assets
- $1.7m
- Revenue
- $1.3m
- Investments
- $0.0
- Employees
- 7
- Location
- Powell, OH
- Founding
- 09/1997
- Data as of
- 12/2023
- EIN
- 91-1780467
Organization Overview
Siegel Rare Neuroimmune Association is located in Powell, OH. The organization was established in 1997. According to its NTEE Classification (G99) the organization is classified as: Voluntary Health Associations & Medical Disciplines N.E.C., under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2023, Siegel Rare Neuroimmune Association employed 7 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Siegel Rare Neuroimmune Association is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2023, Siegel Rare Neuroimmune Association generated $1.3m in total revenue. This represents relatively stable growth, over the past 9 years the organization has increased revenue by an average of 8.4% each year. All expenses for the organization totaled $1.2m during the year ending 12/2023. While expenses have increased by 11.0% per year over the past 9 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2014, Siegel Rare Neuroimmune Association has awarded 17 individual grants totaling $488,208. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
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.
Describe the Organization's Program Activity:
Part 3 - Line 4a
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.
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.
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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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Gabrielle Defiebre Director Of Research And Programs | Officer | 40 | $103,907 |
Chitra Krishnan Executive Director | OfficerTrustee | 30 | $97,250 |
Lana Harder Director | Trustee | 5 | $0 |
Sanford J Siegel President | OfficerTrustee | 20 | $0 |
Deborah Capen Secretary | OfficerTrustee | 20 | $0 |
Linda Malecky Treasurer, Vice President | OfficerTrustee | 20 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,222,107 |
| Noncash contributions included in lines 1a–1f | $50,625 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,222,107 |
| Total Program Service Revenue | $0 |
| Investment income | $48,161 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,270,268 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $105,942 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $211,214 |
| Compensation of current officers, directors, key employees. | $15,666 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $295,201 |
| Pension plan accruals and contributions | $14,760 |
| Other employee benefits | $41,522 |
| Payroll taxes | $39,984 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $11,500 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $94,196 |
| Advertising and promotion | $0 |
| Office expenses | $2,080 |
| Information technology | $34,354 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $10,337 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $42,371 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $4,107 |
| Insurance | $6,404 |
| All other expenses | $0 |
| Total functional expenses | $1,225,221 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $107,820 |
| Savings and temporary cash investments | $1,532,885 |
| Pledges and grants receivable | $54,862 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $0 |
| Net Land, buildings, and equipment | $10,804 |
| Investments—publicly traded securities | $16,666 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $1,723,037 |
| Accounts payable and accrued expenses | $68,881 |
| Grants payable | $0 |
| Deferred revenue | $58,905 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $127,786 |
| Net assets without donor restrictions | $1,253,653 |
| Net assets with donor restrictions | $341,598 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $1,723,037 |
Grants Awarded
Over the last fiscal year, Siegel Rare Neuroimmune Association has awarded $80,000 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
JOHNS HOPKINS UNIV SCHOOL OF MEDICINE PURPOSE: Fellowship award for salary, benefits and supplies for Fellow training in the clinical treatment of and research pertaining to rare neuroiummune diseases | $40,000 |
MASSACHUSETTS GENERAL HOSPITAL PURPOSE: 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. | $40,000 |