Alone we can do so little
together we can do so much
– Helen Keller
– Helen Keller
The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit international 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 Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM).
Founded in 1994 by family members and individuals with these diagnoses, SRNA (formerly the Transverse Myelitis association — read more about the change here) was incorporated on November 25, 1996 in the state of Washington and we became a 501(c)(3) organization on December 9, 1996.
We support individuals living with rare neuroimmune diagnoses and their families, promote awareness to empower patients, families, clinicians and scientists, build a collaborative and dedicated clinical care network and help advance scientific understanding and research.
Sunday, July 31, 1994 at 5:30 in the evening… Pauline fell to the floor with excruciating pain in her lower back and was immediately and completely paralyzed below her waist. She spent nine hours in an emergency room.
We are an information resource on rare neuroimmune disorders for our community through our website, newsletters, blogs, Ask The Expert Podcast Series, educational events such as symposia and workshops for the exchange of current and up-to-date information regarding the diagnosis, treatment and management of these disorders. We offer a support network between persons with these disorders through local support groups located throughout the world and through our partnership with Smart Patients, while also organizing annual quality of life programs such as family camps for children with these disorders and their families. We support the post-residency training of clinicians committed to careers in academic medicine specializing in these disorders, provide grant support to academic Centers of Excellence and fund novel pilot research ideas.
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 individuals with rare neuroimmune diagnoses, families, clinicians, and scientists through education programs and publications
To advance the scientific understanding of and therapy development for these rare disorders by supporting the training of clinician-scientists dedicated to these rare diseases and by supporting critical clinical research
The medical professionals on our Medical and Scientific Council provide critical advice and direction regarding SRNA’s goals, programs, and policies. They help advance our understanding of these rare neuroimmune disorders by conducting research, sharing the latest research in SRNA blog and newsletters, participating as experts in podcasts, reviewing grant applications and participating in education symposia and workshops.
We know it’s important to you that your donation is being used effectively. It’s important to us, too.
You will read about our education and support programs, the research we endorse and conduct, our quality of life family camp, our Jim Lubin Fellowship, as well as all the other important efforts we carry out on a daily basis to better serve our community.
The goal of this online resource is to provide resources, knowledge and help to our community, whether one has been recently diagnosed or has questions several years after onset of a rare neuroimmune disorder.
1787 Sutter Parkway
Powell, OH 43065-8806
+1 (855) 380-3330 (Eastern Standard Time)
Please send all communications and donations to our new bank lockbox address:
PO Box 826962
Philadelphia PA 19182-6962
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