|About||We are dedicated to curing a rare disease that causes blindness/paralysis called neuromyelitis optica (NMO). We fund research and raise awareness for NMO.|
The Guthy-Jackson Charitable Foundation is dedicated to funding research in the quest to understand the pathophysiology and biochemistry of Neuromyelitis Optica (NMO) Spectrum Disorder (NMO/SD), more commonly known as "NMO."
Our Foundation is passionate in its support of programs and opportunities aimed at elevating the clinical paradigm for NMO patients and improving options for treatment, prevention, and an eventual cure for this disease.
We are committed to growing our on-line community for all NMO stakeholders, and to serving as a hub of leading-edge information resources as well as a gateway for all who seek to learn more. In our global outreach, we will continue to steward even more effective connections among academia, healthcare, industry and regulatory partnerships. By reducing barriers to cooperation, our mission is to bring breakthroughs from bench to bedside.
Fully aware that every moment makes a difference in the lives of those diagnosed with NMO, we are patient-centered and science-driven. With such innovations as our own bio-specimen collection network and repository, we dedicate ourselves to widening our outreach by continuing to grow the number of sites where patients can donate blood and clinical data vital for research. On a worldwide basis, we will continue to identify proof-of-concept clinical studies that lead to industry-sponsored clinical trials for promising NMO drugs. Our Foundation does not endorse, sponsor, or conduct these trials. Nor do we opt to participate in any monetary benefit from patents arising out of research we have funded; our grantees—individuals and institutions—retain full ownership of their intellectual property.
We recognize that our findings may serve as a model for helping address the global epidemic of autoimmune diseases and are resolute in developing improved communication tools that share our story of hope and urgency. And as we position ourselves at the nexus of brave new breakthroughs in medicine, genetics, a
Neuromyelitis optica (NMO) is an uncommon disease syndrome of the central nervous system (CNS) that affects the optic nerves and spinal cord. Individuals with NMO develop optic neuritis, which causes pain in the eye and vision loss, and transverse myelitis, which causes weakness, numbness, and sometimes paralysis of the arms and legs, along with sensory disturbances and loss of bladder and bowel control. NMO leads to loss of myelin, which is a fatty substance that surrounds nerve fibers and helps nerve signals move from cell to cell. The syndrome can also damage nerve fibers and leave areas of broken-down tissue. In the disease process of NMO, for reasons that aren’t yet clear, immune system cells and antibodies attack and destroy myelin cells in the optic nerves and the spinal cord.
Historically, NMO was diagnosed in patients who experienced a rapid onset of blindness in one or both eyes, followed within days or weeks by varying degrees of paralysis in the arms and legs. In most cases, however, the interval between optic neuritis and transverse myelitis is significantly longer, sometimes as long as several years. After the initial attack, NMO follows an unpredictable course. Most individuals with the syndrome experience clusters of attacks months or years apart, followed by partial recovery during periods of remission. This relapsing form of NMO primarily affects women. The female to male ratio is greater than 4:1. Another form of NMO, in which an individual only has a single, severe attack extending over a month or two, is most likely a distinct disease that affects men and women with equal frequency. The onset of NMO varies from childhood to adulthood, with two peaks, one in childhood and the other in adults in their 40s.
In the past, NMO was considered to be a severe variant of multiple sclerosis (MS) because both can cause attacks of optic neuritis and myelitis. Recent discoveries, however, suggest it is a separate disease. NMO is different from MS in the sev