The last few months have been a challenging time due to the COVID-19 pandemic, and we at SRNA have worked to find creative ways to continue our programs and services that meet the critical needs of our community. As support group meetings and educational events have shifted to virtual platforms, we still work to connect with one another and provide the support that is central to our mission. Today, we are proud to share news and updates from the last few months in our Fall 2020 Magazine.
In the Magazine, you can read about the first Virtual Rare Neuroimmune Disorders Symposium (RNDS), which was held in August. While we were disappointed to cancel the in-person event at the University of Utah Health, we were able to partner with the University to bring the event online, which allowed a broader global audience to attend. Also, you can learn about the three new FDA-approved medications for maintenance in neuromyelitis optica spectrum disorder. The likelihood of recurrent disease activity is greater than 90% for individuals diagnosed with NMOSD, but maintence medication can help prevent relapses and damaging long-term impacts from recurrence.
Did you know that SRNA has an AFM Physician Consult and Support Portal? Established in May 2019, the portal connects physicians treating patients with suspected or confirmed AFM diagnoses to experts who can provide information and resources. You can also read about the 2020 AFM Virtual Symposium organized by the AFM Working Group, Johns Hopkins Medicine, and the Kennedy Krieger Institute, which consisted of five parts and included presentations from experts across the United States.
Many SRNA Family Camp attendees are familiar with Dr. Jonathan Galli, a neurologist who recently completed his James T. Lubin Fellowship in the rare neuroimmune disorders. Read about his experience completing his Fellowship at the University of Utah Health. You can also read about the Wisconsin Walk-Run-N-Roll, which was pivoted to a virtual event due to the pandemic. Maleah Moskoff, a support group leader and Hope Ambassador for SRNA, organized the event and raised $4,000!
You can read more of the latest news and updates from SRNA in our Fall 2020 Magazine here.