What does it mean to be connected to the Siegel Rare Neuroimmune Association?
Hi there. I’m Ireland, the editor for this issue of SRNA Magazine. And the thing is, the concept of connection is going to be defined differently for everyone.
To me, connection was the first moment I was in a room with someone who had exactly what I had. Someone who looked like me. Someone who mirrored my same sorrow when I told them about my worst days. Someone who held my same joy when I told them about my best days. It was finding someone, and then so many more someones, who I never had to explain myself to. I never had to explain why I couldn’t stand up for that long, why I wasn’t racing around the playground like other kids my age. I could just be myself, and not need to pretend to be entirely healthy.
Connection, to me, means understanding. There are always other ways to define it, and none of them are wrong. You may have your own definition of connection. When it comes to SRNA and connection, here are a few of my favorite ways to see it!
You might think of SRNA’s ability to connect people by the numbers—we are a family of over 15,000 members, from 111 countries.
You might think of SRNA’s ability to connect people by its methods. We consist of support groups and events, blog posts and social media outreaches, and most importantly, we are a mission that seeks to serve our community with the same beautiful purity of our founders sitting at the kitchen table, taking calls from anyone.
Most importantly, I would love for you to think of SRNA’s ability to connect people as an invitation—a personal outreach, to you, to have these small, yet-so-powerful moments, where you are understood and welcomed by people who are like you.
I’m excited to say you aren’t the first to find a home here. In the following stories, I’d like to draw your attention to the ending of each one. These people, each with different backgrounds, different diagnoses, and different experiences, found SRNA and the connection they so desperately were searching for.
