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

2. 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 Uncommon disease syndrome of the central nervous system ( CNS ) Autoimmune Disease

3. NMO affects the optic nerves & spinal cord 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 2

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

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

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 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 7

9. Antibody is a kind of protein in the blood = NMO-IgG (NMO Immunoglobulin G) Antibody seems 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 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 Check the Test! Astrocytes located in brain & spinal cord

11. Is the NMO-IgG necessary 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 undetetectable antibodies that resemble NMO-IgG Testing methods are still being refined

12. Neuromyelitis Optica is NOT Multiple Sclerosis Until recently, NMO was thought to be a type of Multiple Sclerosis Recent discoveries indicate NMO and MS are distinct diseases Traditionally spinal cord lesions seen in NMO are longer than MS but this is not always the case

13. NMO & MS share many symptoms NMO can sometimes be confused with MS or other diseases including Sjögren’s Disease Acute Disseminated Encephalomyelitis (ADEM) NMO and other diseases are treated in different ways Early detection and treatment help ensure best outcomes

14. Some MS drugs can exacerbate an NMO attack

15. NMO has 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

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

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 vulnerable 2

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

19. Patients with 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

20. In response to the Rare Diseases Act of 2002, the NIH established 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

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

22. Founders Bill GuthyVictoria Jackson Their daughter was diagnosed with NMO in 2008

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!

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 Blood samples are vital for NMO research Accessibility to NMO biosamples by 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 samples and 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

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.

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

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.

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 http://www.nmotion.guthyjacksonfoundation.org

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 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 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/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 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 http://www.mayoclinic.org/medicalprofs/enlargeimage5723.html