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Posted On: 07/29/2010

Recent Article in the Wall Street Journal: NIH Takes On New Role in Fight Against Rare Diseases

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Posted On: 07/28/2010

New NMO Research Publication: Familial neuromyelitis optica

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Posted On: 07/27/2010

The Campaign for Better Care will be holding a special public event in Washington, DC — the "Building Better Care" forum. See the link below to view the live webcast tomorrow, July 28th starting at 8:30 a.m. EST.

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Devic’s Support

Posted On: Thu, 29 Jul 2010 22:18:13 UT

Still sleeping too much.

Had my blood work done last week. Cd19s are at zero and Rituxan is
scheduled for the end of next month. Not sure about the rest of the
blood work, though the nurse thought that all results were within
normal range. Neuro called and left a message that he would be
speaking with the nurses regarding what he'd like to do next.

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Posted On: Thu, 29 Jul 2010 02:03:41 UT

finally home

I got bit by an unknown bug last night. When I went to sleep last
night, I took Benadryl because the area was the size of a golf ball
(that is my normal reaction). Well, when I got up this morning, it
was the size of a baseball. I took a shower and then all heck broke
loose. My right arm up to my shoulder is double in size, red, hot,

[click for more]

Posted On: Mon, 26 Jul 2010 13:00:08 UT

Collin is hospitalised.

Little Collin is having a bad flare and is currently hospitalised.
See his CaringBridge site for Lisa's updates.

[link]

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NMO Discussions

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Derek Blackway

NMO Patient Session 2010

Comments: 6

Join Us for our live webcast or attend in person! Event: NMO Patient DayDate: Nov. 10, 2010Participate in our live webcast ofthe 2010 NMO Patient Day or attend in person!To atten....

Eric: We are new to the Spectrum Community. Our daughter, Ireland, was just diagnosed with NMO three weeks ago. She is 8 years old and has had this disease since she was 6. We are absolute....

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Steve Ornburn

Living with NMO: Collin’s Story

Comments: 1

Neuromyelitis optica (NMO) doesn’t look at age, race or gender. Collin’s story is about a courageous young boy and his family who have stopped at nothing to put his needs above their own a....

Grace: Little Collin and his entire family are an inspiration. We love you Collin McD! Grace....

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Chief Moderator

Q & A about NMO with Ben Greenberg, M.D, M.H.S.

Comments: 5

Q & A about Neuromyelitis Optica Spectrum Disease with Ben Greenberg, M.D, M.H.S. A top clinician in NMO, Dr. Benjamin Greenberg talks with Spectrum about NMO treatment, diet a....

Grace: Hello Dr. Greenberg, Another question if I may. What of the patient who experiences a clinically defined relapse (Not a pseudo exacerbation.) at the desired 0% and 0 absolute CD19 count?&....

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Derek Blackway

Neuromyelitis Optica Treatment at Mayo Clinic Restores Grace Jeffers’ Sight

Comments: 0

In 2009, Grace Jeffers of Chicago was wheelchair-bound, having severe back pain and losing control of the left side of her body. She had been diagnosed with multiple sclerosis, but when a blood test s....

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Derek Blackway

Map of the United States

Comments: 2

Click on the map to enlarge. ASIA EUROPE SOUTH AMERICA UNITED STATES Alabama 1. Clinician: Jayne Ness, M.D., Ph.D.C....

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Steve Ornburn

Derek Blackway

Comments: 1

Click on the map to enlarge. ASIA EUROPE SOUTH AMERICA UNITED STATES Argentina 1. Clinician: Silv....

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Steve Ornburn

Pioneering a New Scientific Research Model

Comments: 1

The Guthy-Jackson Charitable Foundation works to create a scientific research model that will ultimately cure patients with neuromyelitis optica (NMO) spectrum disease. GJCF Founder Victoria Jackson a....

StevenB: My dad suffers from Idiopathic Pulmonary Fibrosis, a very serious, orphan lung disease. He and Mom viewed a number of the videos over the weekend. They were very impressed with the new rese....

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