EIN 91-1780467

Siegel Rare Neuroimmune Association

IRS 501(c) type
501(c)(3)
Num. employees
7
City
State
Year formed
1996
Most recent tax filings
2023-12-01
NTEE code, primary
Description
The Siegel Rare Neuroimmune Association advocates for individuals with rare neuroimmune disorders, providing education, research support, and community resources to enhance their quality of life.
Also known as...
The Transverse Myelitis Association
Total revenues
$1,270,268
2023
Total expenses
$1,225,221
2023
Total assets
$1,723,037
2023
Num. employees
7
2023

Program areas at Siegel Rare Neuroimmune Association

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 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.
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.

Grants made by Siegel Rare Neuroimmune Association

GranteeGrant descriptionAmount
Partners Healthcare SystemAcquired 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
Johns Hopkins University (JHU)Fellowship Award for Salary, Benefits and Supplies for Fellow Training in the Clinical Treatment of and Research Pertaining To Rare Neuroiummune Diseases$40,000

Who funds Siegel Rare Neuroimmune Association

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$11,900
United Way of the Greater Lehigh ValleyDonor Designated for General Support$7,012
Naomi and Terrence Thomas FoundationGeneral Support$250
...and 2 more grants received

Personnel at Siegel Rare Neuroimmune Association

NameTitleCompensation
Chitra KrishnanExecutive Director$97,250
Gabrielle (GG) deFiebreDirector of Research and Programs
Roberta PesceCreative Director
Krissy DilgerResearch and Program Manager
Deborah CapenSecretary$0
...and 3 more key personnel

Financials for Siegel Rare Neuroimmune Association

RevenuesFYE 12/2023
Total grants, contributions, etc.$1,222,107
Program services$0
Investment income and dividends$48,161
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$1,270,268

Form 990s for Siegel Rare Neuroimmune Association

Fiscal year endingDate received by IRSFormPDF link
2023-122024-10-10990View PDF
2022-122023-10-05990View PDF
2021-122022-10-20990View PDF
2020-122021-11-10990View PDF
2019-122021-04-02990View PDF
...and 9 more Form 990s
Data update history
December 8, 2024
Posted financials
Added Form 990 for fiscal year 2023
November 18, 2024
Used new vendors
Identified 1 new vendor, including
November 18, 2024
Updated personnel
Identified 2 new personnel
October 31, 2024
Updated personnel
Identified 1 new personnel
July 11, 2024
Received grants
Identified 3 new grant, including a grant for $100,000 from Sky High for Kids
Nonprofit Types
Grantmaking organizationsDisease research fundraisersProfessional associationsDisease-focused nonprofitsCharities
Issues
HealthEducationMedical disciplines
Characteristics
Conducts researchPeer-to-peer fundraisingNational levelGala fundraisersFundraising races, competitions, and tournamentsTax deductible donationsAccepts online donations
General information
Address
1787 Sutter Pkwy
Powell, OH 43065
Metro area
Columbus, OH
County
Franklin County, OH
Website URL
wearesrna.org/ 
Phone
(855) 380-3330
IRS details
EIN
91-1780467
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1996
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G90: Medical Disciplines
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
California AB-488 details
AB 488 status
May Operate or Solicit for Charitable Purposes
Charity Registration status
Current
FTB status revoked
Not revoked
AG Registration Number
117757
FTB Entity ID
None yet
AB 488 data last updated ("as-of") date
2024-12-31
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