30 Years of Community

We hope that the last few articles were as interesting to you all as they were to us! It’s amazing to see where we were and how much we’ve grown since then. Sandy wrote in one of his letters that he and the others in the organization “believe we are laying a good foundation.” Sandy was right—he made the foundation, and all this was able to be built. We recognize and honor him for the years of love he has poured into people. Now, it’s our turn to pour our love out to him.

Thank you, again, Sandy.

In the next few articles, we will be showing four stories from over two decades ago, and one story that we recently published on our blog. These stories are of people who found solace in joining our organization and connecting with others with rare neuroimmune disorders.

Although some of these stories can be harrowing, there’s something touching in how people find something positive, either in spite of the disorder or because of the disorder, and learn to adapt to their life. All our community’s stories are amazing to read—anyone who’s been impacted can look to any one of them and find themselves in someone’s else’s experiences. Perhaps not the specific circumstance is the same, but we all experience the same sense of grief, the same sense of fear, the same feeling when we’ve had a small triumph.

We find solace in each other, across physical distance and across time. The people who wrote to us 30 years ago asking that their story be included can sound so very much like the people who would want their story to be told today. Although it’s awful that people are continuing to experience these disorders, there’s something beautiful in finding yourself in the words some other person wrote 20 to 30 years ago.

We hope reading these next few stories can make you feel seen. Please know that you are not alone.