The Siegel Rare Neuroimmune Association Kicks Off Awareness Campaign
POWELL, Ohio, July 31, 2024 (Newswire.com) - Rare neuroimmune disorders can happen without warning and have devastating, lifelong effects. This was the case for Pauline Siegel. On July 31, 1994, she collapsed with intense pain in her lower back and soon was completely paralyzed below her waist. Pauline spent several days in the hospital and was eventually diagnosed with transverse myelitis (TM), a rare neuroimmune disorder where the immune system mistakenly attacks the spinal cord.
Pauline and her husband, Sandy, had never heard of TM. They couldn’t find any information and felt scared and alone. Their search for answers led them to connect with others who were facing similar challenges. Together, they founded the non-profit The Transverse Myelitis Association that became the Siegel Rare Neuroimmune Association (SRNA) in 2019. SRNA provides information and support to people who are affected by TM and other rare neuroimmune disorders of the central nervous system.
Someone with a rare neuroimmune disorder is often faced with catastrophic consequences. These can include paralysis, vision loss, chronic pain, cognitive issues, and breathing difficulties. Currently, there is no cure for these disorders.
Each week for the next five weeks, SRNA will be sharing stories from its community members to mark its 30th anniversary and raise awareness about rare neuroimmune disorders. The stories share the challenges, triumphs, resilience, and determination of people living with these disorders.
Ten-year-old Francisco was only three years old when he was diagnosed with acute flaccid myelitis in 2016. His story shows the many trials children with these conditions and their families face and emphasizes the importance of early diagnosis and community support. “It’s okay if you’re diagnosed. You can push through it,” Francisco shares. “If you put your mind to it, you can make it.”
SRNA was founded to ensure that no one diagnosed with a rare neuroimmune disorder feels scared and alone like the Siegels did. The organization is dedicated to:
- Supporting people living with rare neuroimmune diagnoses and their families
- Promoting awareness to empower those diagnosed, families, clinicians and scientists
- Building a collaborative and dedicated clinical care network
- Advancing scientific understanding and research
SRNA encourages everyone to follow its community members’ journeys and learn more about the challenges and advancements in treating rare neuroimmune disorders. The organization is also accepting donations as part of a matching campaign.
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The Siegel Rare Neuroimmune Association is a non-profit organization dedicated to the support of people with acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optical spectrum disorder, optic neuritis, and transverse myelitis. Our goal is to improve the quality of life of individuals with these rare neuroimmune disorders. Visit our website to learn more.
Source: The Siegel Rare Neuroimmune Association