SRNA Magazine
2022 | Issue 1
The value of our gatherings for the community are immeasurable, including our medical community. We learn so much from our medical professionals and they also learn from us. Being able to be with a patient community outside of their clinics offers them a perspective on people that they would not have without these experiences. I’ve observed these relationships at our education symposia and at our quality-of-life family camps.
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Our 2021 Annual Report has been released! We encourage you to learn more about how we are providing hope and help to those with rare neuroimmune disorders.
Skye Corken joined SRNA this year as our new Communication and Engagement Coordinator. We are excited for you to learn more about Skye!
The Siegel Rare Neuroimmune Association is pleased to announce that Dr. Haiwen Chen has been selected to receive the 2023 SRNA James T. Lubin Fellowship Clinician Scientist grant award.
We are incredibly grateful for the generous support we received during our 2022 SRNA Registry Campaign. Over $53,644 was raised thanks to our community and the Mike A. Myers Foundation.
Join us for our 2022 Rare Neuroimmune Disorder Symposium from October 7-9! This will be a three-day hybrid (in-person and online) educational event.
The purpose of the Progress Grant for NMOSD is to help the broader NMOSD community understand how to improve diagnosis, treatment, and quality of life of people with NMOSD.
At Cleveland Clinic’s Pediatric Multiple Sclerosis (MS) and Neuroimmunology Center, they provide care for children and adolescents with MS and other neuroinflammatory disorders.
As part of SRNA’s dedication to continuing education, our team members have attended conferences to continue growing their knowledge.
SRNA has two series of podcasts! For our Ask the Expert podcast series, we invite experts to share the latest knowledge and answer our community’s questions.
So far this year, over 100 attendees joined us for 20 Support Group Meetings, with guest speakers who joined us to cover topics like physical therapy, mental health, and bowel and bladder issues.
“This is Me” is a series of short, personal videos that members of our community make about their experience with rare neuroimmune disorders.
In honor of Rare Disease Month in February, SRNA was excited to offer a virtual Rare Do Care Walk-Run-N-Roll. We are so grateful to the members of our community who participated!
Did you know that SRNA has merch? Check out our official SRNA store with t-shirts and sweatshirts for sale in multiple colors and designs here.
This year, SRNA held awareness months from March to July. We chose one rare neuroimmune disorder to raise awareness for each month.
Ireland Thomas was diagnosed with NMOSD as a child. In this powerful piece, she discusses her experiences with this diagnosis as she has gotten older.
In June, we started offering a yoga series through the Hands to Heart Center. These virtual Chair Yoga classes are taught by Brigitte from Rooted Boston.
SRNA is excited to announce that we have partnered with NeurologyLive to create educational content for doctors and patients. We are grateful for their partnership.
Because SRNA is dedicated to facilitating research for rare neuroimmune disorders, we have a clinical studies and trials resource page that highlights research that is currently underway.
A recent study was published on transverse myelitis (TM) data from the Veteran Health Administration’s (VHA) electronic medical records from 1999-2015.
