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NMO A Path to Progress

Howard Weiner, MD:

There are diseases that are not that common, but they can really destroy people’s lives. We can’t let that happen.

Howard Weiner, MD:

A disease may be rare, but if it’s in your family, it’s not very rare. We need to help everybody.

Victoria Jackson:

We are the only foundation in the world for NMO. This has been headquarters.

Ali Guthy:

My mom planted the seed for this foundation five years ago, and it’s grown into this beautiful, flourishing tree. NMO patients can come together and really share their stories and become a family.

Brian Weinshenker, MD:

10 years ago when we wrote about this disease, 30% of people within five years died. I haven’t taken care of a patient with respiratory failure now in a number of years.

Ben Greenberg, MD, MHS:

Our understanding of the disease is night-and-day different.

Dean M Wingerchuk, MD:

Patients are diagnosed at an earlier stage, and they’re diagnosed more accurately.

Alan Verkman, MD, PhD:

The foundation has done a fabulous job in facilitating collaboration.

Jacqueline Palace, DM, FRCP:

There is a clear plan that everybody is encouraged to work towards

Larry Steinman, MD:

Immense amount of data sharing that is unprecedented.

Howard Weiner, MD:

It’s crucial to bring people together and have them work together, and this is the model the foundation has established.

Claudia Lucchinetti, MD:

The foundation integrates the kind of critical thinking, multidisciplinary approach that we need.

Jacqueline Palace, DM, FRCP:

That’s why it’s such a successful process. I don’t think I’ve ever seen any field move so quickly.

Scott Zamvil, MD, PhD:

This is the best neuromyelitis optica meeting in the world.

Tanuja Chitnis, MD:

I am meeting people who I’ve only read their papers and seen their names.

Michael Levy, MD, PhD:

Bringing people together, putting them in a room where we could shoot ideas at each other.

Amit Bar-Or, MD:

Today’s meeting represents a phenomenal evolution of where we were, where we are, and where we’re going.

Katja Van Herle, MD, MSPH:

It’s not just for the clinicians and researchers; it’s for the patients. They’re the top of the tree.

Michelle Dean:

They have the benefit of all these doctors across the world.

Thia Parodi:

There’s a lot of conversation and engagement. A dialogue continues to happen.

Christine Ha:

The foundation has been able to pull doctors and clinicians and patients together to work for one common cause. A lot of things are possible in this lifetime.

Michael Yeaman, PhD:

The people in the room are the solution to this disease.

Ben Greenberg, MD, MHS:

They’ve been stepping up to the plate and donating samples for scientists so they can better understand the disease.

Douglas Salo, MD:

That really motivated the scientists because you have a model.

Warren Wasiewski, MD:

We’re going to create treatments that are life changing for these patients.

Carrolee Barlow, MD:

There are a number of new therapies based on something called monoclonal antibodies.

Sean Pittock, MD:

Using an antibody that blocks the activation of a substance called complement, we may be able to stop NMO attacks.

Warren Wasiewski, MD:

It’s a global effort using our resources to be able to reach out and put this trial together.

Ben Greenberg, MD, MHS:

Starting in the US and then North America, France and Germany, the UK, Japan, South America, all have efforts going on to build repositories.

Brian Weinshenker, MD:

This disease has gone under so many different names in different parts of the world. It was getting to know many of these physicians that convinced me this really was the same condition.

Michael Yeaman, PhD:

Not only do we hope to solve NMO, but we hope to advance solutions to other diseases.

Victoria Jackson:

It can help in Alzheimer’s, in Parkinson’s, in Huntington’s disease, in Lou Gehrig’s ALS.

Pablo Villoslada, MD:

I would love to be part of a beautiful history, which is a discovery of a disease and the treatment.

Amit Bar-Or, MD:

Five years ago I would describe to patients how there’s this foundation out there, this sort of little engine that thinks it can. It’s great to be able to talk about the little engine that is.

Victoria Jackson:

I’m seeing a deliverable of something that’s going to be meaningful to a lot of people around the world.

 

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