Goal Statement on Connection

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

Connection has been, is, and will continue to be a core motivation for SRNA.

30 years ago, our founders Sandy and Pauline Siegel would take phone calls at their kitchen table from all across the U.S. after putting their number online. They opened their hearts to people and fostered a community based entirely on connection. They’ve touched countless lives, and have had their own life touched in return.

We would like to invite you to experience that connection. We know from firsthand experience that illness can be incredibly isolating. Factoring in how these rare neuroimmune disorders still remain unknown by society-at-large, there are moments when you may feel entirely alone.

You are not alone.

And we’re grateful that Sandy and Pauline set out to change that. We want to continue to be a place that fosters connection, community, and even the sense of being a family. We are separate people, with separate lives, but we’re drawn together by mutual experiences and hard feelings.

30 years later, the pure motivation of our founders to have open arms for those who are impacted by rare neuroimmune disorders remains a firm value of SRNA. We continue to believe that SRNA can help connect, care, and eventually cure these rare illnesses, and we are glad to have all our members along for that journey. If you’re not a member already, please sign up. We’d love to have you join us!

Please enjoy this issue on connection, where we’ll discuss how people have become connected to SRNA and found a sense of belonging, how connection to others can change before and after receiving a diagnosis, and ways in which you can connect to others who understand you and your experiences. We’ll share information about the upcoming rare disease day, in which many rare disease communities come together to foster awareness, about other upcoming events hosted by SRNA, and we’ll celebrate our 30 year anniversary!