SRNA Magazine

2021 | Issue 1

To have hope for the future, we must learn more about all these disorders. What is the disease process? How do we more rapidly diagnose with more precision? Can we determine a cause? What is the most effective way to treat them acutely to minimize damage to the central nervous system? What are the most effective symptom management practices? Is it possible to find a cure? Is it possible to repair the damage to the central nervous system? We all have these questions, and the answers depend on our ability to fund the research.

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SRNA is excited to welcome Angel Simpelo as Administrative Assistant and Lydia Dubose as Volunteer & Community Coordinator.

The SRNA community from all over North Carolina gathered for the first North Carolina Walk-Run-N-Roll this October.

SRNA community members Alyssa and Roderick competed in two Ironman triathlons to raise awareness and funds in support of SRNA.

SRNA would like to extend our sincere thanks to all of our members who donated and showed their support for our community this year.

In the summer of 2021, SRNA ran three awareness campaigns to bring attention to rare neuroimmune disorders and SRNA.

The 2021 Rare Neuroimmune Disorders Symposium (RNDS) was held virtually in October. This year’s symposium featured 42 expert speakers and was attended by nearly 200 people.

We gathered online on September 3 and September 4 with community member Grace Fisher and her parents, Bill and Debbie, for our Virtual Camp.

support group meetings
Check out three free resources for support, as SRNA is committed to supporting individuals living with rare neuroimmune diagnoses and their families.

We want to hear from you about your experiences with NMOSD, more specifically about your perceptions on quality of life and long-term care.

SRNA, CDC, clinicians, and researchers remain vigilant and are ready to support families and children should an outbreak or spike in AFM cases occur.

Former SRNA Board Member, Dr. Anjali J. Forber-Pratt, is the Director of the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) at the Administration for Community Living (ACL).

There is a new study that aimed to explore how adolescents conceptualize disability identity and what factors may influence the development of disability identity in adolescents.

The first consensus publication of clinical guidance on Acute Flaccid Myelitis (AFM) has been published by the AFM Working Group.

Former SRNA Fellow Dr. Elena Grebenciucova recently opened the Transverse Myelitis Clinic at Northwestern Memorial Hospital.

We are excited to announce the launch of a multidisciplinary center caring for children, adolescents, and young adults with neuroinflammatory diseases at Cincinnati Children’s Hospital.

Researchers Dr. Michael Levy, Dr. Itay Lotan, and Gabriela Romanow conducted an anonymous survey to report real-world safety data of the COVID-19 vaccine in persons with rare neuroimmune disorders.

We recently posted updated information sheets on our website in order to share the latest knowledge on rare neuroimmune disorders.

Though nearly two years have passed since the start of the COVID-19 pandemic, there are still many unanswered questions regarding how the virus affects the rare neuroimmune disorder community.

In order to keep you informed, we at SRNA have developed additional online resources that cover the latest advancements in NMOSD care and therapeutics.

SRNA has a clinical studies and trials resource page that highlights research that is currently underway.

SRNA has two podcast series for those diagnosed with a rare neuroimmune disorder, relatives and caregivers, and medical experts.

Please consider sharing your story, or a loved one’s story, by recording a “This is Me” video.

If you have lost a loved one to a rare neuroimmune disorder, we invite you to honor their memory and celebrate their life by creating a memorial for them.

We are excited to announce that SRNA is creating a presence on LinkedIn, so please follow us there for updates!

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