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Neuromyelitis Optica NMO

[insert your name, date & organization or event]. Neuromyelitis Optica NMO. Neuromyelitis Optica ( NMO ) Spectrum Disease Originally known as Devic’s Disease Eugene Devic was a French neurologist who summarized the features of the condition in 1894 1

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Neuromyelitis Optica NMO

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  1. [insert your name, date & organization or event] NeuromyelitisOpticaNMO

  2. NeuromyelitisOptica (NMO) Spectrum Disease Originally known as Devic’s Disease Eugene Devic was a French neurologist who summarized the features of the condition in 18941 Uncommon disease syndrome of the central nervous system (CNS) Autoimmune Disease What is NMO?

  3. NMO affects the optic nerves & spinal cord What is NMO? Optic Nerve

  4. NMO leads to loss of myelin – a fatty substance that surrounds nerve fibers and helps nerve signals move from cell to cell Demyelinating Disease 2

  5. Immune system cells and antibodies attack and destroy myelin cells in the optic nerves and the spinal cord What is NMO?

  6. Individuals with NMO develop Optic Neuritis (ON) Inflammation of the optic nerve Eye pain Vision loss Transverse Myelitis (TM) Weakness, numbness and sometimes paralysis of the arms and legs Sensory disturbances and loss of bladder and bowel control NMO Symptoms

  7. After the first attack, NMO follows an unpredictable course Most experience clusters of attacks months or years apart, followed by partial recovery during periods of remission Relapsing form of NMO primarily affects women Female to male ratio > 4:1 NMO Attacks 3 4 5 6

  8. The onset of NMO varies from childhood to adulthood, with two peaks, one in childhood and the other in adults in their 40s NMO Attacks 7

  9. Antibody is a kind of proteinin the blood = NMO-IgG(NMO Immunoglobulin G) Antibodyseems to be present in about 70% of people with NMO Not present in people with MS or other conditions that can present with NMO-like illnesses NMO-IgG Antibody • The discovery of an antibody in the blood of individuals with NMO gives doctors a reliable way of determining if someone has NMO

  10. Doctors can diagnose very early (probably after the first attack of ON or myelitis) people who are at risk to develop further symptoms that would lead to a later clinical diagnosis of NMO Doctors can consider preventive measures, to reduce the chance of relapse or severity of a second neurological attack NMO-IgG Antibody Astrocytes located in brain & spinal cord Check the Test!

  11. Is the NMO-IgGnecessary for diagnosis of NMO? No 30% of individuals with NMO, for reasons currently not understood, do not have this antibody when tested However, when present it helps to make a more confident diagnosis There may be undetetectableantibodiesthat resemble NMO-IgG Testing methods are still being refined NMO-IgG Antibody

  12. NeuromyelitisOptica is NOT Multiple Sclerosis Until recently, NMO was thought to be a type of Multiple Sclerosis Recent discoveries indicate NMOand MS are distinct diseases Traditionally spinal cord lesions seen in NMO are longer than MS but this is not always the case MS / NMO What You Need to Know

  13. NMO & MSshare many symptoms NMOcan sometimes be confused with MS or other diseases including Sjögren’s Disease Acute Disseminated  Encephalomyelitis (ADEM) NMO and otherdiseasesare treated in differentways Early detection and treatment help ensure best outcomes MS / NMO What You Need to Know

  14. Some MS drugs can exacerbate an NMO attack TreatmentTherapies

  15. NMOhas no cure - yet Therapies exist to treat an attack while it is happening: Reduce symptoms Prevent relapses Initial attacks of NMO usually treated with combination of: Corticosteroid drug (methylprednisolone) Stop the attack Immunosuppressive drug (azathioprine) Prevention of subsequent attacks TreatmentTherapies

  16. Plasma exchange (plasmapheresis) Separates antibodies out of the blood stream Used with people who are unresponsive to corticosteroid therapy Pain, stiffness, muscle spasms, and bladder and bowel control problems can be managed with the appropriate medications and therapies TreatmentTherapies

  17. No one knows – yet Why this is predominantly restricted to these two locations is a mystery Possibly a unique protein in these structures or the blood vessels in these regions, makes them vulnerable2 Why do people get NMO?

  18. Rare diseasesaffect fewer than 200,000 people in the United States About 7,000rare diseases exist that affect more than 25 million Americans and their families Rare diseases present a significanthealth care concern NMO Is a Rare Disease

  19. Patientswith rare diseases are frequently misdiagnosed or are undiagnosed Few drug companies conduct research into rare diseases since it is difficult to recover costs of developing treatments for small, geographically dispersed populations NMO Is a Rare Disease

  20. In response to the Rare Diseases Act of 2002, the NIHestablished the Rare Diseases Clinical Research Network I (RDCRN I) to address the unique challenges of research on rare diseases In 2009, the NIH funded 19 continuing and new clinical research consortia to strengthen the ongoing clinical research in rare diseases NMO is not included in the consortia National Institutes of Health Response

  21. Dedicated to funding basic science research to find answers that will lead to: NMO Prevention NMO clinical treatment programs Potential cure for NMO The Guthy-JacksonCharitable Foundation

  22. Founders Bill GuthyVictoria Jackson Their daughter was diagnosed with NMO in 2008 The Guthy-JacksonCharitable Foundation

  23. Funding NMO Scientific Research at: Brigham and Women’s Hospital, Harvard, MA Johns Hopkins University, Baltimore, MD Mass General Hospital, Boston, MA Mayo Clinic, Rochester, MN Mount Sinai School of Medicine, New York, NY Stanford University, Stanford, CA University of California, San Francisco, CA University of California, Los Angeles, CA University of Colorado Denver, Aurora, CO University of Texas Southwestern Medical Center, Dallas, TX More on the way! The Guthy-JacksonCharitable Foundation

  24. GJCF Biorepository for NMO If you or someone you know has been diagnosed with NMO, please donate blood samples to the NMO Blood Bank NMO “Blood Bank” Blood samples are vital for NMO research Accessibility to NMO biosamplesby our research scientists is an urgent need

  25. We need NMO blood samples You can help us meet this critical need by donating your blood samplesand raising awareness of our repository program Donate again and often! Ways to donate Repository Nurse will travel anywhere in the USA NMO Patient Day Donate Blood Samples at LabCorp NMO blood draw sites NMO “Blood Bank”

  26. Ways to donate blood Repository Nurse will travel anywhere in the USA If you have NMO (or you know someone who has NMO) and you are willing to donate data or samples to our cause, please contact our Repository Nurse at 858.333.1704 or email at: repository@guthyjacksonfoundation.org. NMO “Blood Bank”

  27. Ways to donate blood NMO Patient Day GJCF hosts a group draw at NMO Patient Day in Los Angeles, CA. Location, Los Angeles, CA Check website for future dates NMO “Blood Bank”

  28. Ways to donate blood Donate Blood Samples at LabCorp NMO blood draw sites The Guthy-Jackson Charitable Foundation is expanding its biosample draw sites. Working with Laboratory Corporation of America (LabCorp), NMO patients will be able to donate their blood samples at 59 new sites in the United States. Details are coming soon. Please visit our website for the launch announcement of the GJCF - LabCorp NMO blood draw sites. NMO “Blood Bank”

  29. Many ways to donate to NMO science Direct donations via GJCF website Get creative Hold Fundraising events like: Bake Sale Walks / runs / relay races Auction Become inspired at: http://www.nmotion.guthyjacksonfoundation.org Donate to NMO Science

  30. Sources 2. Office of Communications and Public Liaison National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD 20892 http://www.ninds.nih.gov/disorders/neuromyelitis_optica/neuromyelitis_optica.htm 3-6. The Walton Centre. http://www.old.thewaltoncentre.nhs.uk/services/devic_s_disease/information_on_nmo.asp 7. Weinshenker BG. Neuromyelitis optica: what it is and what it might be. Lancet 2003;361(9361):889-90. Office of Communications and Public Liaison National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD 20892 The Guthy-Jackson Charitable Foundation. http://www.guthyjacksonfoundation.org/nmo-ms-what-you-need-to-know/ Image Credits Smith’s Science.http://1.bp.blogspot.com/__y-lXOrOC8A/TN6zQ8RBQXI/AAAAAAAACZ0/F3RNORK9lYY/s1600/myelin.jpg Healthy vs. Damaged nerves: Elements for Health. http://www.elements4health.com/statins-could-have-a-negative-impact-in-multiple-sclerosis-patients.html Mayo Clinic. http://www.mayoclinic.org/medicalprofs/enlargeimage5723.html

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