POWELL, Ohio, February 29, 2024 (Newswire.com)
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The Siegel Rare Neuroimmune Association (SRNA) is commemorating 30 years of improving the quality of life of individuals with rare neuroimmune disorders (RNDs). In pursuing the goal of making life better for people diagnosed with these conditions, SRNA has spurred research, provided specialized training for medical professionals, and fostered innovative support programs.
“When my wife, Pauline, was diagnosed with transverse myelitis 30 years ago, we felt isolated and desperate for information and support. This experience was the catalyst for creating a network that supports those affected by these devastating conditions,” shares Sandy Siegel, president of SRNA.
In rare neuroimmune disorders (RNDs), a person’s immune system mistakenly attacks the brain, spinal cord and/or optic nerves. These disorders have lifelong and devastating impacts, often leading to permanent complications such as difficulty breathing, depression, vision loss, persistent pain and even paralysis. They can affect individuals of any age. People who are diagnosed have no warning that this life-changing event will happen. These disorders can relapse so people who are affected may face this crisis multiple times, adding to the complexity of care. Misdiagnosis, delayed diagnosis and delayed treatments are common, resulting in unhindered disease progression and disability. Conservative estimates indicate that 83,000 Americans have some type of disability caused by rare neuroimmune disorders. Progress has been made in diagnosing and treating these disorders, but no cure exists.
SRNA supports, educates and connects people with these disorders, their families, clinicians and scientists. SRNA facilitates a collaborative, dedicated network of researchers and healthcare professionals focused on providing exceptional care, and invests in scientific research, therapy development and training of expert clinician-scientists.
SRNA’s Story
One evening in July 1994, Pauline Siegel fell to the floor with excruciating pain in her lower back. She was immediately and permanently paralyzed below her waist. Pauline was diagnosed with the rare neuroimmune disorder transverse myelitis (TM). The Siegels had never heard of TM. “We couldn’t find any information about this disorder. There was no medical institution in the world with a TM center, no doctor who specialized in TM, and no researchers doing any studies on it,” Sandy explains. “We were afraid and also felt entirely alone because we couldn’t find a support group anywhere in the world.”
This experience prompted Sandy to search for other people dealing with TM. He found five other families and together they created SRNA. Over time, SRNA welcomed people with other related RNDs including acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optical spectrum disorder (NMOSD) and optic neuritis (ON). The organization has always believed that people with rare neuroimmune disorders would be stronger and better able to have support, awareness, education and research opportunities by banding together. Today, SRNA supports a community of more than 15,000 people in over 121 countries through support groups, raising awareness, creating educational materials, and funding research opportunities.
SRNA’s Impact
Since 1994, SRNA has been the leading voice in rare neuroimmune disorders by focusing on its three Cs:
- Connect: SRNA connects people with RNDs and their families with others who face the same medical hardships, raises awareness of RNDs, and hosts an annual family camp that brings together children diagnosed with rare neuroimmune disorders, their families, and medical specialists.
- Care: SRNA educates those diagnosed by providing up-to-date and easily accessible medical information, providing learning opportunities that empower those affected to make informed decisions about their health, and expanding the number of medical professionals who understand these disorders.
- Cure: SRNA advances the scientific understanding of and therapy development for RNDs by funding innovative research studies and the training of clinician-scientists that specialize in RNDs to increase the number of experts throughout the country.
SRNA’s important work is made possible through the generous support of the organization’s community and sponsors.
Looking to the Future
Throughout the 30th anniversary year, SRNA encourages people who don’t know about rare neuroimmune disorders and their lifelong impact on those diagnosed to learn more. Visit the SRNA website and Facebook, LinkedIn and Instagram for 30th anniversary education and advocacy events and information.
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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
