30 Years of Impact: Goal Statement
Welcome to SRNA’s fourth quarterly magazine of 2024, themed on 30 Years of Impact, as this year marks the 30th anniversary of our organization.
If you’ve read the previous three issues of our 2024 magazine, you’ll know that we covered the 3 major words that make up the goals of our organization. These words are connect, care, and cure.
Connect, to us, is representative of our mission to ensure no one feels alone. The growth we’ve experienced over the course of 30 years has been tremendous. In our 1997 report, our organization reported that our membership of 180 people was now more than 925 and growing. And it really has grown! We now serve over 15,000 individuals and their families impacted by rare neuroimmune disorders, and we are proud to continue to do so in the future. Being here this long has allowed us to connect thousands of people worldwide who share the same or similar stories. Whether you’re diagnosed with ADEM, AFM, MOGAD NMOSD, ON, or TM, we’re here to connect with you and give you a space to have your story be heard and understood.
Care is our most central tenet. 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. Why did they choose to open up their lives like that, accepting calls from anyone at any time? Because they chose to care, and to care to that extent takes self-sacrifice and dedication. We see that same care in physicians, in neurologists and immunologists and ophthalmologists and so on, handling case after case with dedication after working for years to obtain a degree and proper experience in the field. We see it in nurses, nine hours into a twelve hour shift, who still put in the effort to comfort and ensure the health of those who need them most. We see it in the families, the friends, and the spouses of those with rare neuroimmune disorders, who despite it all choose to take the time to care for their loved ones. We see care here, in the pure intention of SRNA. Our founders opened their hearts to people, and fostered a community. They touched countless lives, and have had their own life touched in return. We will continue to do the same. We’re proud to provide support groups, symposiums, disease information resources, and other events that serve our community better. We want to continue to be a place that fosters connection, community, and even the sensation of being a family. We are separate people, with separate lives, but we’re drawn together by mutual experiences and hard feelings.
Lastly, cure. There would be no organization if there was not also a strong desire for one. The lives of those impacted by rare neuroimmune disorders can be incredibly hard, and no one would wish this experience on anyone else. However, cure can be a heavy word for many in the community. It’s something we’re all hopeful for, but something we have had to manage as best we can without. Those with rare neuroimmune disorders and their loved ones know a cure will happen someday. The question is, when? We don’t have the answer yet. But as an organization, we strive to help fund that cure, and in the meantime, to connect and care for all those in the rare neuroimmune community who have had their lives impacted by these conditions.
These three tenets make SRNA what it is—an organization of love for people. A home for those whose lives have been marked by a rare neuroimmune disorder, where people can find one another and find support in knowing there are others just like them, going through the same motions and relearning their life. This is why we celebrate 30 years—because we’ve gotten an amazing opportunity to serve our community and make the lives of those with rare neuroimmune disorders easier.
In the final issue for 2024, SRNA magazine will be covering articles depicting our origins, 30 years ago, and then we will cover what all we are doing now to care and connect for our community. We hope you enjoy reading it!
