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The NMO Story

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Can solving one rare autoimmune disease unlock the door to solving all autoimmune diseases? It’s called neuromyelitis optica or NMO for short. And as little as seven years ago, a quick Google search yielded almost no results. What little information there was around NMO positioned it as an extreme variant of multiple sclerosis. It was considered an orphan disease, meaning that it affected fewer than one in 2,500 individuals. One person afflicted by NMO was a young girl named Ali, and when her parents first learned of her disease, they discovered how little information or attention it received. Research wasn’t promising and there were no clinical trials being conducted.

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Drawing on her knowledge as a business owner and entrepreneur, Ali’s mother, Victoria Jackson and her husband started the Guthy Jackson Foundation, with the mission to solve NMO by catalyzing biomedical research to better understand the causes of the disease and find ways to stop it.

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Traditional medical research often happens in secret silos. The Guthy Jackson Foundation tore down these walls, bringing together the best and brightest minds in many fields, enabling a real-time collaborative exchange of ideas and insights. Today, the Guthy Jackson Foundation is the homebase for information and tools available to all NMO stakeholders, from patients and researchers to clinicians and industry or government partners. The foundation has also flown in patients from around the world to create a biobank from their medical data, enabling researchers to make breakthrough discoveries at the speed of life.

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Acting as the hub that connects over 100 leading researchers across 22 different countries, the Guthy Jackson Foundation has radically transformed understanding of NMO by applying real-world experience to streamline the way mission critical research is prioritized, funded, and measured. It’s an interactive, bold, all hands-on-deck strategy that is saving and improving lives. We now know that NMO is not a variant of MS, but a unique autoimmune disease. This fact alone has all ready helped both NMO and MS patients receive the best diagnosis and treatments available and unraveling the mysteries of NMO will also bring us closer to finding solutions for other autoimmune diseases.

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Even today, autoimmune diseases are a number one cause of illness in women with a prevalence twice that of cancer. Many experts project that in the next two decades, autoimmune disease will become a leading cause of illness and death across the global population, including men, women, and children, which is why more than ever we need allies like you to join us in our mission to solve NMO.

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Where once knowledge of NMO was scarce and momentum stalled, today, there are multiple clinical trials taking place. Groundbreaking research is accelerating in diverse fields, converging on new solutions, and every day we’re getting closer to quantum leap breakthroughs in precision medicine and personalized immunotherapy. While orphan diseases such as NMO may only afflict a small portion of the population, each person affected is a golden masterpiece to the autoimmune puzzle that will ultimately lead to cures that save and improve millions of lives. NMO is the little disease that could, and with your help, we’ll make autoimmune disease history. Join with us today.

 

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