Before the start of another new year, join us as we reflect on some of our best moments of 2022. We launched new programs such as our Peer Connect Program, released new podcasts, hosted events, supported research, brought the community together for the 2022RNDS, enjoyed a special week at camp, held online support group meetings, raised awareness for rare neuroimmune disorders, and so much more.
Throughout this year, the SRNA community has been reading blogs, accessing resources, listening to podcasts, sharing videos, and connecting through social media. Read on to find out more about SRNA’s top moments from 2022.
This year, blog topics ranged from sharing about awareness days to event recaps and more. Several community members generously shared their stories and perspectives by writing for the blog. The top three blog posts that stood out this year were community stories; a few excerpts are included below followed by information about two of our other top blogs.
“The period after Daniel was discharged home from the hospital was challenging. Many adaptations were needed in the house to allow Daniel to live his life somewhat independently. For me as a mother, this period was the hardest. I felt that I was left on my own. There was no one to guide me through the maze of services that would be needed to help meet Daniel’s needs. It was a new normal, and I did not know what I did not know.” – Daniel’s Story: A Mother’s Perspective on TM by Balsam Ahmad
“I was wheeled into a room in the ER, where I met Dr. Lesley Perez. I thank God often that she was working on the day I came in. As she began to examine me and ask me questions, she mentioned a condition called Transverse Myelitis, and based on what I was describing, she was going to order tests to investigate that further.” – My TM Story by Wendy Greasamar
“For the next few days, there was a constant parade of doctors and nurses poking, prodding, and asking questions. The worst part was when nobody was around because I realized I was in a place very few people understood. So, in the middle of the night, I finally got a chance to Google “transverse myelitis.” Thank God, it led me to SRNA. The resources on this site helped me know I wasn’t alone and, more importantly, that I was going to be ok.” – My TM Story by Mike Hoffman
In June, we shared about the SRNA Registry with words from the team. As SRNA Executive Director Chitra Krishnan said, “A registry is a powerful tool to learn from our community about the natural history of the disorders, learn about treatments and evaluate outcomes. It is a tool that will help us develop better treatment guidelines and facilitate more research to better understand these rare neuroimmune disorders.”
When it comes to rare neuroimmune conditions, we often discuss the challenges with diagnosis, symptom management, and long-term physical impairments. The impact of being diagnosed with a rare disease on an individual’s mental and emotional health is just as crucial to discuss and study as these other challenges. Learn more about mental health and rare neuroimmune conditions in this blog post.
In the Resource Library, anyone can access hundreds of helpful podcasts, symposia videos, research summaries, and more. People turned to SRNA to learn more about the differences, diagnoses, and treatments of rare neuroimmune disorders, with most looking to the Ask the Expert podcast episodes to find more information.
A lot of people were interested in learning The 5 W’s: Who, Where, What, Which, and Why? This resource provides an overview of the rare neuroimmune disorders and was authored by Dr. Cynthia Wang, a former SRNA fellow. As the coronavirus (COVID-19) pandemic continued, our COVID-19 and Rare Neuroimmune Disorders information page remained an important and sought-after tool for the SRNA community. Others learned about the psychological changes that can occur for people with demyelinating conditions in this podcast episode.
Listeners of our Ask the Expert podcast series learned about causes, symptoms, treatments, and more related to autoimmune encephalitis in this 2019 podcast episode. Others wanted to learn more about MOG Antibody Disease (MOGAD) with an overview of the diagnostic tests used for MOGAD and how it is differentiated from other demyelinating conditions. Those seeking information about Transverse Myelitis (TM) listened to the latest related to diagnosis and treatment guidelines and found out more about ongoing symptom management, treatments, and different providers in this episode. Nerve transfers was a popular resource for people interested in Acute Flaccid Myelitis (AFM).
Top Social Media
We saw a lot of engagement from the SRNA community on social media, especially during our awareness months and the Rare Neuroimmune Disorders Symposium. People from all over the globe enjoyed connecting and sharing stories through posts on Facebook, Instagram, Twitter, and LinkedIn. Our work reached our followers in Australia, Canada, Northern Ireland, the United Kingdom, France, Germany, and so many others. To keep up with the latest on social media, keep an eye on these hashtags #WeAreSRNA #ThisIsMe #ADEMAwareness #AFMAwareness #NMOSDAwareness #MOGADAwareness #TMAwareness.
What were your favorite blogs, resources, or posts from SRNA this year? What would you like to see from us in 2023? Email [email protected] and let us know.