SRNA Magazine

2024 | Issue 1


From the very first day until today, one of the most important things the Siegel Rare Neuroimmune Association offers to people is a connection to others in a way that no one else could possibly relate to or understand.

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Welcome to SRNA’s first quarterly magazine of 2024, themed on connection.

SRNA’s ability to connect people is an invitation—a personal outreach, to you, to have these small, yet-so-powerful moments.

I am so encouraged by SRNA and the work that they are doing to raise awareness for rare neuroimmune disorders.

My phone rang. When a neurologist calls on Sunday from home, you know it’s either very good or very bad news.

I had no idea what transverse myelitis was. I had no idea what was happening to me and why I couldn’t walk.

I have connection, and I have community, and I am not alone in this anymore.

Connection allows for mental well-being and the social aspects of recovery after diagnosis.

It is important to acknowledge the ways community members are moving forward and embracing new activities, routines, and futures.

I have adapted and have amazing people in my life and in many ways, I am happier than I was before TM.

The best part of accepting yourself as you are and living as large of a life as you’re capable of leading is that you do not have to be alone.

SRNA’s 2024 Quality of Life Family Camp is now open, and there’s never been a better time for kids, tweens, and teens impacted by rare illness to be in community with others impacted by illness.

Although life with a rare neuroimmune disorder is often complicated, complex, and taxing, it is also beautiful and worth the living.

Without camp, I would still be stuck in that intense isolation and the mindset that no one else understood what I was going through.

A special one-day virtual event!

Opportunities we have for you to connect.

Get matched. Get connected. Get support.

Help us empower those diagnosed in with one of these disorders in the future, one story at a time.

30 Years of Community.

Thank you for reading.

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