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What is 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 18941

• Uncommon disease syndrome of the central nervous system (CNS)

• Autoimmune Disease

What is NMO?

NMO affects the optic nerves & spinal cord

Optic Nerve

Demyelinating Disease• NMO leads to loss of myelin – a fatty substance

that surrounds nerve fibers and helps nerve signals move from cell to cell

2

What is NMO?• Immune system cells and antibodies attack and

destroy myelin cells in the optic nerves and the spinal cord

NMO Symptoms 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 Attacks

• 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

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NMO Attacks

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

NMO-IgG Antibody

• 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

NMO-IgG Antibody• 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

NMO-IgG AntibodyIs 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

MS / NMO What You Need to

Know• 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

MS / NMO What You Need to

Know• 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

Treatment Therapies

Some MS drugs canexacerbate an NMO attack

Treatment Therapies• 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

Treatment Therapies• 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

Why do people get NMO?

• 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

NMO Is a Rare Disease• 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

NMO Is a Rare Disease• 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

National Institutes of Health Response

• 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

The Guthy-JacksonCharitable Foundation

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

Founders

Bill Guthy Victoria Jackson

Their daughter was diagnosed with NMO in 2008

The Guthy-JacksonCharitable Foundation

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!

NMO “Blood Bank”• 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

NMO “Blood Bank”• 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

NMO “Blood Bank”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”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”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.

Donate to NMO Science

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

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