SRNA Magazine

2024 | Issue 3

Edited and Compiled by Landy Thomas


In this issue of the magazine, we will address the most difficult and, perhaps, consequential aspect to our mission: finding a cure for these disorders. When Pauline and I first began this work, we knew that research needed to be done. We didn’t know what specific research needed to be accomplished and we didn’t know a single human being who might do it. That world has changed dramatically.

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Welcome to SRNA’s third quarterly magazine of 2024, themed on cure.

A cure has not happened yet—but in the meantime, our greatest ally is each other.

We are all stronger together. But what does that mean, and why does it matter?

RNDS brings together professionals and patients, creating a mutual learning environment.

Our recipe for hope anchors on social connectedness and consistent access to trusted healthcare providers.

Here we are, almost 6 years since being told I have NMOSD.

To seek out the cure, we have chosen to band together.

"Normal" might come again, but it’s not here yet. Live, and don’t let anyone stop you.

Embracing the changes that come with a diagnosis doesn’t mean never having “bad” days or moments.

Is it possible to even have a successful career post-diagnosis? The answer is yes.

Art can be a distraction against trauma and a weapon to combat it.

I began to meditate and journal, and instead of fighting my pain, I learned to sit with it.

No matter your situation, you can strive to make your life as good as possible, work every day to improve your situation and fight for everything you can.

This is your life, your story, and your body living with a rare disease. Make them take notice.

Disability Pride means being unapologetically proud of my identity as a disabled person.

This community isn’t my world, but she is.

Although the cure isn’t here yet, I trust that it will happen someday. But for now, I am living. We are living.

In honor of our 30th, we are sharing six stories from members of our community who have shaped our collective journey.

Join us at the 2024 Rare Neuroimmune Disorders Symposium!

We hope this issue of SRNA Magazine spoke to you. We hope you feel invited and seen.

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