In Loving Memory of Pauline

When I suddenly became paralyzed in 2009, I was lucky enough to be diagnosed within a few hours of my onset of paralysis. My doctors knew what transverse myelitis was, they knew how to treat it, and I received IV steroids that night. My family found SRNA’s website and connected with the TM center of excellence at Johns Hopkins, which helped me get the best care possible. None of this would’ve been possible without the tireless efforts of Pauline and Sandy Siegel. When Pauline was diagnosed with transverse myelitis in 1994 there were no centers of excellence and no network of physicians focused on these disorders. I am so grateful that they saw a need and committed to ensuring that no one else facing this diagnosis would face it alone. I do not know how different my life would’ve been without them. They were fighting for me before I even knew this would be my fight. I am so grateful, and I know I am not the only one.

Tragically, Pauline passed away last year, on August 15th. We at SRNA, our community, and her family and friends remember her dearly. We remember her strength, her honesty, her compassion, and her commitment to our community. Despite the difficulties she faced, Pauline always managed to see and feel the blessings of her experience, and never lost hope for a better tomorrow. Pauline lived her life trying to improve the future of other people with rare neuroimmune disorders. Today, and every day, we honor and remember her.

Gabrielle deFiebre, Associate Director, Research and Education