Siegel Rare Neuroimmune Association
Siegel Rare Neuroimmune Association
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About this organization
Mission
The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders including: Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody-Associated Disease (MOG-Ab disease), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM).
About
The TMA publishes a newsletter 3 times a year and an annual report that is distributed to its membership. The newsletters contain articles written by physicians that focus on rare neuroimmunologic disorders as well as the most effective treatments for symptom management. Regular updates that relate information about new treatments and research are also included. The TMA 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 TMA members; and archives of all past newsletters. The website also facilitates support contracts between patients and their families through support groups and social media contacts. In addition, the TMA has held a symposium to bring together individuals diagnosed with rare neuro-immune disorders and the clinicians and researchers that focus on these disorders. This event is the only one of its kind. Our goal is to continue providing this valuable resource to our community for many years to come.
Interesting data from their 2019 990 filing
The non-profit's aim, as stated in the filing, is “To support and advocate for individuals and their families diagnosed with rare neuro-immune 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 diseases and by supporting basic and clinical research. our goal is to improve the quality of life of individuals with rare neuro-immune disorders.”.
When referring to its actions, they were outlined as: “To support and advocate for individuals and their families diagnosed with rare neuro-immune 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 diseases and by supporting basic and clinical research. our goal is to improve the quality of life of individuals with rare neuro-immune disorders.”.
- The non-profit has complied with legal obligations by reporting their state of operation as WA.
- The non-profit's address in 2019 is noted in the filing as 1787 Sutter Parway, Powell, OH, 43065.
- The non-profit's form for 2019 reports a total of 9 employees.
- Is not a private foundation.
- Expenses are between $500,000 and $1,000,000+.
- Revenue is between $500,000 and $1,000,000+.
- Revenue less expenses is -$185,871.
- The organization has 12 independent voting members.
- The organization was formed in 1996.
- The organization pays $283,288 in salary, compensation, and benefits to its employees.
- The organization pays $62,798 in fundraising expenses.
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