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LEAD Campaign to Solve NMO – 2018 NMO Patient Day

Michael:

We started the day suggesting that we’ve come a long way in 10 years together with you and we also said that we have further to go. There are clinical trials going on. Yes, those are stepping stones to cures. The Power of Rare is a book and within that book is a blueprint of how Victoria and Bill and the foundation have changed the world, starting with NMO. And if you read the book, you will find in it your handwriting. It really is a reflection of all that you have done and if you think about the idea of a leader, a leader is someone who takes action in the face of it would be easier to not, who takes action when maybe others would not. You are leaders and we just want to take a moment to recognize that, to thank you for that and to provide a couple of ideas going forward as was said to carry the torch.

If we look at the next slide, one of the things that we’ve tried to do is put this into words in a way that identifies exactly what you have been doing and that we need to continue to do together, how to be an NMO leader, and we’ve made that into a little bit of an acronym that emphasizes four points. Lead, a verb that contains many actions within it. First, learn the facts about the latest research in NMO. Hopefully you’ve gotten a lot of that today. The field is changing so quickly, we all need to keep up with it. It’s in our best interests to be able to tell others what’s happening in NMO.

But it’s not enough to just know what’s happening, we have to engage. We’ve got to be part of the conversation. We need to tell those around us, but we need to tell those around them, not just about NMO. NMO is a model. NMO is the starting point. We need this to go viral. We need others who have autoimmune diseases that aren’t NMO to know about this model, to know about the little disease that could and that is changing the world. We need you and everyone to assess the options of what can be done. What can be done? Because ultimately, the difference between success and just letting it go for somebody else to do is action. And so it comes down to a decision, knowing what can be done, knowing the tool kits that the foundation has provided, what will you do? That’s the question and it’s for you to decide.

There are a few things that we’ve talked about today, if you could change to the next slide, that are tangible, real opportunities to go even further than we’ve already gone. We’ve talked about tolerizing for cures. Functional cures are going to be great and they are coming, and it may be sooner than you think. And that gives us a chance to go beyond functional cures and focus on absolute cures, permanent cures that do not require any further therapy. We’ve also talked about the concept of my relapse radar. Wouldn’t it be great if you could simply know when a relapse might be coming? Call your doctor, get a medicine, keep it from happening.

We’ve also created a new type of grant award that are called the Big Ideas Grants, big standing for Breakthrough Initiative Grant. These are not just me too kinds of studies, these are studies that challenge what we think we know best about NMO. They are projects that turn everything we know upside down and shake it in a way that new discoveries will come out that we haven’t even thought of yet. All these are opportunities and just to put some numbers around the costs and time that these can take, just by example, you can see a few listed here. We’ve talked about the NMO-PRO platform as surveys that will help us gather information very quickly and very effectively from the patient perspective. We’re talking about those who know the disease best.

I mentioned the Big Ideas Grants. We EUREKA Grants and Cure Grants and one of the opportunities that’s new is for individuals who might want to pull together and create resources to name one of these projects on behalf of their loved one, someone they’ve lost, someone who is important in so many ways. You know about the circle sites, those take a lot of resources. And just to give you a sense of the dollars that go into a big biomarker study, or even a tolerization trial, you can see that those get into the millions of dollars. We’re all leaders, whether we know it or not. We are. We take action when others might not. And so we’re just thinking with you, how can we work together in ways that are greater than the sum of our parts? And you’ll see some of these opportunities appearing online and through the ambassadors that you’ve heard from and we appreciate so much. And so we just really ask you to consider what can you do? What’s your decision to be in the story of NMO?

And now I just want to give you a couple of other thoughts before we invite Victoria back to the stage. It’s about this time every year when we recognize two things, two concepts that are so important to everything we do. The first relates directly to the Power of Rare and we talked about how just a handful of patients, 500, are really changing the therapeutic options for hundreds of thousands of patients. That is rare. That’s rare among rare. These people are heroes. But we also know that each of us can contribute. There’s a proverb basically that I like to mention about this time every year and it comes down to this, and maybe it just helps to really think about it together. And it’s basically, I am only one, but still I am one and I cannot do everything, but still I can do something. And it’s precisely because I cannot do everything that I must do the something that I can do.

And that’s what it comes down to. What can we do? What will we do? And so that’s for your logic and now for your spirit. We’ve thanked patients, we’ve thanked investigators. We know how important their efforts are. One group of people who often receives too little thanks are the caregivers. These are people who experience much of the same struggle with NMO as the patients. It changes their lives too. And so we just want to take a moment and say thank you to the caregivers.

 

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