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
2022-12-01
NTEE code, primary
Description
Siegel Rare Neuroimmune Association supports, advocates, and empowers those diagnosed with rare neuroimmune disorders through education programs and research grants.
Also known as...
The Transverse Myelitis Association
Total revenues
$1,218,351
2022
Total expenses
$1,096,315
2022
Total assets
$1,636,191
2022
Num. employees
7
2022

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 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.
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 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.

Grants made by Siegel Rare Neuroimmune Association

GranteeGrant descriptionAmount
Partners Healthcare System / Massachusetts General HospitalAcquired 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

Who funds Siegel Rare Neuroimmune Association

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Sky High for KidsGeneral Donation$100,000
National Philanthropic TrustHealth$51,500
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$44,450
...and 7 more grants received

Personnel at Siegel Rare Neuroimmune Association

NameTitleCompensation
Chitra KrishnanExecutive Director$87,545
Linda MaleckyTreasurer$0
Sanford J SiegelPresident$0
Deborah CapenSecretary$0
James T LubinExecutive Committee Member$0

Financials for Siegel Rare Neuroimmune Association

RevenuesFYE 12/2022
Total grants, contributions, etc.$1,208,273
Program services$27,714
Investment income and dividends$-17,636
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$1,218,351

Form 990s for Siegel Rare Neuroimmune Association

Fiscal year endingDate received by IRSFormPDF link
2022-122023-10-05990View PDF
2021-122022-10-20990View PDF
2020-122021-11-10990View PDF
2019-122021-04-02990View PDF
2018-122021-03-10990View PDF
...and 8 more Form 990s
Data update history
November 30, 2023
Posted financials
Added Form 990 for fiscal year 2022
November 25, 2023
Posted financials
Added Form 990 for fiscal year 2021
October 23, 2023
Received grants
Identified 4 new grant, including a grant for $20,098 from United Way of the Greater Lehigh Valley
July 7, 2023
Updated personnel
Identified 1 new personnel
June 14, 2023
Posted financials
Added Form 990 for fiscal year 2020
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 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
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