Care Goal Statement
Welcome to SRNA’s second quarterly magazine of 2024, themed on care.
There’s a reason why care has always been a central tenet for SRNA.
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 anytime?
Because they chose to care.
To care takes self-sacrifice and dedication.
We see it 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 in their care.
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.
And 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 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.
30 years later, the pure motivation of our founders to have open arms for those who are impacted by rare neuroimmune disorders remains a firm value of SRNA. We continue to believe that SRNA can help connect, care, and eventually cure these rare illnesses, and we are glad to have all our members along for that journey. If you’re not a member already, please sign up using this link. We’d love to have you join us!
Please enjoy this issue on care, where we’ll discuss what it means to care for those with rare neuroimmune disorders, look over stories of those who’ve cared or been cared for, and recognize the amazing ways SRNA has been able to support and care for its members over its 30 years.
We’ll also share information about the upcoming events, our animated rare neuroimmune disorder educational microcourses, and what we did in 2023 in the form of our annual report.
