30 Years. Our Beginning


In this first set of articles, we will be showing the early days of our organization. Called the Transverse Myelitis Association at the time and later renamed to the Siegel Rare Neuroimmune Association so as to include more diagnoses, the early days were rough. With the internet just beginning to become readily available and accessible to people across the world, Jim Lubin, who we’ve discussed in a previous issue and will discuss again here, created and developed a way for us to reach out to people digitally. Without Jim, there would be no organization, and we continue to be grateful for his efforts.

We will also be showing an article series which we’ve now compiled into one article, “The Process Of Adaptation To Effects Of Severe Injury And Illness” by James A. Arnett and Denise S. Rabold. It was of great importance to us to publish these articles because not only can these disorders greatly impact one’s physical health—it can also greatly impact one’s mental health. Adapting to these disorders isn’t easy—but a primary goal since the organization’s inception was to provide resources and advice on how to keep living a good life while having a rare neuroimmune disorder.

Even with the struggles that come with these disorders, there were moments of connection in our early days that lightened the burden. One of these moments was our second rare neuroimmune symposium, and included in this magazine is an excerpt of Sandy’s welcoming remarks for that event, back in 2001. These symposiums continue to occur today, and serve as a wonderful excuse to gather together and to learn the most up-to-date information about rare neuroimmune disorders, including recent findings, ongoing research, and means by which to cope with the disorders.

Notably, in just this last October, Dr. Douglas Kerr gave a keynote speech about some of his most recent findings. He has been an important figure within our community since our early days. He has written several pieces for our newsletters over the years, and his article, “History of TM” covered succinctly all we knew about TM at the time of writing, which was the year 2000. Reading it not only is like a time capsule to the past, but it also serves as a measure of all the progress we’ve made since that time.

Lastly, there will be a set of found poems composed of Sandy’s “From The Editor” Letters. Please tilt your phone horizontally in order to read it if viewing on mobile. As Poets.org defines it, found poems take existing texts and refashion them, reorder them, and present them as poems. We felt this was the best way to showcase these old letters, and to celebrate Sandy’s amazing work and pure heart. He has always been a good man, a friend to all, and a leader we stand by. Thank you, Sandy, for helping so many of us.
Please enjoy the following articles. We are so happy to show you our early years!