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
Grantee | Grant description | Grant year | Amount |
---|
Partners Healthcare System | 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. | 2023-12 | $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 | 2023-12 | $40,000 |
Who funds Siegel Rare Neuroimmune Association
Grants from foundations and other nonprofits
Personnel at Siegel Rare Neuroimmune Association
Name | Title | Compensation | Date of data |
---|
Chitra Krishnan | Executive Director | $97,250 | 2024-11-18 |
Gabrielle (GG) deFiebre | Director of Research and Programs | | 2024-11-18 |
Roberta Pesce | Creative Director | | 2024-11-18 |
Krissy Dilger | Research and Program Manager | | 2024-11-18 |
Deborah Capen | Secretary | $0 | 2024-11-18 |
...and 3 more key personnel |
Financials for Siegel Rare Neuroimmune Association
Revenues | FYE 12/2023 | FYE 12/2022 | % Change |
---|
Total grants, contributions, etc. | $1,222,107 | $1,208,273 | 1.1% |
Program services | $0 | $27,714 | -100% |
Investment income and dividends | $48,161 | $-17,636 | 373.1% |
Tax-exempt bond proceeds | $0 | $0 | - |
Royalty revenue | $0 | $0 | - |
Net rental income | $0 | $0 | - |
Net gain from sale of non-inventory assets | $0 | $0 | - |
Net income from fundraising events | $0 | $0 | - |
Net income from gaming activities | $0 | $0 | - |
Net income from sales of inventory | $0 | $0 | - |
Miscellaneous revenues | $0 | $0 | - |
Total revenues | $1,270,268 | $1,218,351 | 4.3% |
Organizations like Siegel Rare Neuroimmune Association
Organization | Type | Location | Revenue |
---|
Gbscidp Foundation International | 501(c)(3) | Conshohocken, PA | $6,141,343 |
International Foundation for Gastrointestinal Disorders | 501(c)(3) | MT Pleasant, SC | $745,241 |
American Syringomyelia and Chiari Alliance Project | 501(c)(3) | Longview, TX | $887,640 |
CurePSP | 501(c)(3) | New York, NY | $3,308,947 |
Epilepsy Foundation of Greater Los Angel | 501(c)(3) | Los Angeles, CA | $1,736,089 |
The Clearity Foundation | 501(c)(3) | San Diego, CA | $2,411,926 |
Alzheimers of Central Alabama | 501(c)(3) | Birmingham, AL | $1,007,831 |
Alzheimer's Disease Resource Center (ADRC) | 501(c)(3) | East Islip, NY | $593,639 |
Minnesota Brain Injury Alliance | 501(c)(3) | Roseville, MN | $5,203,664 |
Alzheimer's Tennessee | 501(c)(3) | Knoxville, TN | $1,907,887 |
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/Â
- 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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