President’s Column
It is my pleasure to present the last issue this year of SRNA’s quarterly magazine, themed on 30 years of impact.
When my wife, Pauline, was diagnosed with transverse myelitis 30 years ago, we felt isolated and desperate for information and support. This experience was the catalyst for creating a network that supports those affected by these devastating conditions. I never could have guessed how many lives our organization has been able to touch.
Even after 30 years, the Siegel Rare Neuroimmune Association continues to grow. The interconnectedness of the world has intensified with new technologies. The medical community is developing its understanding of the rare neuroimmune disorders, including the fairly recent diagnoses of MOGAD and AFM. We would love for the numbers to slow down and eventually disappear, but as there is no cure on the horizon for our autoimmune disorders (or any of the many autoimmune disorders), we anticipate that our numbers will still grow.
As our membership and community increase in size, so too does the complexity of our work. Educating and supporting 100 people is a very different proposition from being able to support and offer education to our many members who speak many different languages, practice many different cultures, and have access to such varied qualities of health care. However, even with the difficulties, we’ve been able to help so many, and we are learning to help more as time goes on.
I am so proud and grateful for our excellent staff and our many exceptional volunteers. As a volunteer for the past 30 years, I can attest to the fact that volunteers remain the foundation of our organization. We could not do this work without them, and we are grateful for their generous involvement. They continue to develop such creative and effective ways to keep our community informed. They are establishing a number of excellent programs to provide the critical support our community needs. While we know that there is power in our membership as a community together, we are also aware of the great diversity that exists among our members in their symptoms, their quality of life, the languages they speak, and the society and culture in which they live. Our staff is constantly working to create programs that are going to be meaningful and effective for all our members.
It is through the staff and volunteers of SRNA that the mission carries on, and that we can have the impact we have today. In this issue of the magazine, we will include passages from 30 years ago up until the modern day, reflecting on the legacy of the work. I hope that while reading you feel the same sense of pride in our organization’s accomplishments.
Please take care of yourselves and each other,
Sandy