SRNA

Recovery from a rare neuroimmune disorder is often a long and difficult process. From the individual experiencing the changes and frustration with their body, a sense of grief over what they can no longer do the same as before, to the family and loved ones feeling helpless and uncertain how to connect with someone they love so much, it can be so isolating. Connecting with other individuals diagnosed with the disorder, or caregivers and loved ones who understand the shock and overwhelming sense everyday may bring living with a diagnosis, to relating to the long hours of physical therapy, we offer the opportunity for personal connections. And connections in 2019 didn’t fall short. Our Support Group Network has grown to 35 national and international support group leaders. Being able to speak or correspond with someone who truly empathizes with all the nuances these disorders can bring to a person or family can mean a day, a moment, is easier to see through – even the celebratory ones. A new friendship or learning of a new resource from a personal connection or support group meeting can offer a shining light of hope to someone, reassuring them that they’re not alone. We’re in this together.

We keep our members up-to-date with our weekly blog posts featuring stories from our community, research summaries, event recaps, SRNA news, and more. In 2019, we posted 55 posts to our blog and had over 1,800 subscribers.

The need for guidance and quick answers to questions about a rare neuroimmune diagnosis led to the creation of the Myelitis Helpline, a free online resource that allows those who have recently been diagnosed, or anyone at any point after the onset of a rare neuroimmune disorder, to get answers and support about living with their disorder and to ask detailed questions.

SRNA has an extensive collection of information on rare neuroimmune disorders available, which are housed in our Resource Library. Podcast recordings, videos of presentations from past symposia, research summaries, information sheets, and more are available at no cost to anyone with internet access. In 2019, we added 67 new resources to the library.

To date, the SRNA Registry has had 208 participants complete the survey. Of the respondents, approximately 82% are diagnosed with transverse myelitis, 7% are diagnosed with neuromyelitis optica spectrum disorder, 5% are diagnosed with acute disseminated encephalomyelitis, 2% are diagnosed with acute flaccid myelitis, 1% are diagnosed with MOG antibody disease, and 7% are diagnosed with another disease or have yet to receive a diagnosis. Any individual diagnosed with a rare neuroimmune disorder, or the parent or caregiver of a child under 18-years-old who is diagnosed with one of these disorders, may participate.