SRNA Magazine
2024 | Issue 2
Edited and Compiled by Ireland Thomas
Each of us involved in establishing the organization came into this experience with our own set of caregiving situations. Parents caring for a very young child who was diagnosed. Parents of a young teen. A parent caring for an adult child. And husbands who were caregivers for wives. Each of these situations was unique … they are all unique and based on the individuals and the severity of symptoms. What existed in each situation was a tremendous amount of love, compassion, and empathy. What was also present in each of our cases was an ongoing and intense fight for independence.
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Please enjoy this issue on care, where we’ll discuss what it means to care for those with rare neuroimmune disorders and look over stories of those who’ve cared or been cared for.
In considering who we are as an organization, and who we are as people, we’d like to stop to ask a question.
I stopped feeling like I was spinning out of control and like maybe there was some hope in sight.
Jim is what this organization stands upon, what it protects, and one of many who it represents.
She inspires me, and as her husband, I will continue to do whatever it takes to support her in any way possible.
To care for someone with a rare neuroimmune disorder means to set aside major portions of your life for the sake of others’ wellbeing.
Having a rare neuroimmune disorder means your life is different, and the way you go about living is changed from the way it was before.
I’m conquering a health battle I never imagined I would have to fight.
I continue to be involved in the community and hope to spread awareness of rare neuroimmune disorders through the perspective of being a sibling.
I was relieved to finally have a diagnosis. But learning about TM was also very disturbing.
I developed a true passion for understanding rare diseases and assisting others through counseling and emotional support.
Having a rare neuroimmune disorder impacts everything, particularly relationships. I wish things were different—but I can’t change the fact that I have this condition.
Choosing to care comes at a cost, but it is a beautiful choice.
We’re grateful to have been part of the lives of so many people, and we’re excited to continue our mission for another 30 years, and another 30 after that.
We aim to end rare neuroimmune disorders so that no one will have to experience the heartbreak of having these conditions ever again in the future.
This online educational experience is tailored to provide a comprehensive understanding of rare neuroimmune disorders.
Learn how to pitch your rare neuroimmune disorder story to your local media.
Care. It’s the driving force that changes people’s lives for the better.
