We are excited to announce that we have changed our name to the Siegel Rare Neuroimmune Association (SRNA), effective November 1, 2019. Our new name honors our founders, Pauline and Sandy Siegel, and now represents all the people we serve and have diligently advocated for over the past 25 years: those affected by rare neuroimmune disorders of the central nervous system including Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), and Transverse Myelitis (TM).
We are still the same organization, on a mission to connect people, care for those who are impacted, and to further our work of finding a cure and ending rare neuroimmune disorders for good; just like we have for the past 25 years. As the Siegel Rare Neuroimmune Association, we will continue to support, educate, and advocate for anyone affected by rare neuroimmune conditions. Our new name amplifies this mission, as we continue to work together to connect, care, and cure.
We asked members of our community, some of whom attended the 2019 Rare Neuroimmune Disorder Symposium in Columbus, OH from September 19-21, to share their thoughts on our new name and our message of “stronger together.”
“There is comfort and encouragement in togetherness. It builds strength and motivation.”
- Amanda Stuckey, TM
“Meeting fellow rare neuroimmune diagnosed patients is heartwarming and encouraging in the healing process.”
– Robin Kaminski, NMOSD
“A rare neuroimmune disease is not something to take on alone. SRNA has connected our family with other families facing the same challenges, as well as support and medical professionals that we otherwise may not have found. Together we can further research on these conditions and have a better chance on finding treatments and cures. We can also support each other during a family’s most difficult times.”
– Jason and Rebecca Clark, Parents of Addison Clark, MOGAD
“We are stronger together because we need as many people to come together for one cause so we can get our voices heard, so we can advocate for all of us that have a rare neuroimmune disorder and not just one thing. We can do this. We will do this! Stronger together.”
– Amy Shultz, TM
“Our particular disease, ADEM, is so rare that to be able to be a part of an organization that brings together doctors, nurses, therapists, and other families is remarkable. We are honored to be a part of the SRNA family. We were not put on this earth to be alone but to join together with others and help each other. By doing so, we are a group of individuals, alone we are weak, but when we are together — we are stronger together!”
– Maxwell Clark, ADEM
“All of these diagnoses are so rare and having a group of people who have had similar experiences is invaluable.”
– Thomas Griffith, MOGAD
“As a parent of a child with Acute Flaccid Myelitis, the support and resources the Transverse Myelitis Association has provided to us over the years have been invaluable–and this name change is an outward sign of their commitment to all rare neuroimmune diseases! We’re so grateful for SRNA and their ongoing fight for those affected by AFM.”
– Rachel Scott, mother of Braden, AFM
“Stronger Together because “it takes a village”!”
– Kimberly Mazur, caregiver/mother to Jordan, Longitudinal Extensive TM
We are so grateful and humbled by the support of our community. We could not accomplish our work without your generosity and care. SRNA is excited to take this next step in our journey with you, and we hope that you are excited too! If you would like to tell us why you believe we are stronger together, please email us at [email protected].