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Welcome & NMO State of the Union – 2018 NMO Patient Day

Ali:

Good morning, everyone. It’s my honor, as always, to welcome you to Patient Day. This is our ninth annual Patient Day, it’s very exciting. I am very excited to be here and to have seen a lot of familiar faces this morning. It’s good to see you all. But I know we also have a lot of new people here today. I’ve already met a few of you, we’ve got Isabella down here in the front, I’m going to call you out because she gave me a beautiful crane this morning. Yeah, thank you. We have patients from France all the way in the back, traveled far to be here. Yeah, if you’re new, let’s give applause to everybody who’s new here today. Thank you for coming.

Ali:

I remember the first annual Patient Day I was here. The room was a lot smaller than this, so we’re grateful to have all of you with us today. It’s the ninth annual Patient Day, but we are actually celebrating 10 years of research. So we have a decade of amazing science and progress behind us, we’ve come so far from where we were then and we have so many amazing things to share with you all today from where we’ve gone over the last 10 years. So a lot has changed from last year, a lot of exciting progress, a lot of new things to share. So today will be a really exciting day for everybody and I’m happy to share that all with you.

Ali:

Just a quick update, I know a lot has changed for the foundation in the last year, a lot’s changed personally, some people are like, “How’s that marketing job of yours going?” And I’m like, “I’m actually in law school now.” So thanks, yeah, that’s a lot thanks to you all, having helped build up my public speaking abilities over the last 10 years so I feel comfortable standing in a courtroom saying, “You’re out of order.” So thank you all for helping me advance in that as well. So unfortunately it is my first year, so I have a final exam tomorrow, so I will be sneaking out a little early today, unfortunately, but it’s really great to spend the morning with you all and I’m excited for what a great day this will be.

Ali:

So with that, it has always my honor and privilege to introduce the woman behind, the force behind, all this incredible progress, and that is my beautiful mother, Victoria Jackson, right over there. Yeah. Let’s give her a round of applause. Like I said, she is a force, a force of nature. None of us would be where we are without her. I mean, speaking for me personally, I would not be where I am without her. So just please help me in giving a warm welcome to my beautiful, brilliant, intelligent, gorgeous, amazing, I can’t go on with enough adjectives, mother, Victoria Jackson.

Victoria J:

Thanks, I love you.

Victoria J:

Hey, how are you everybody? It’s really nice to be here. Well, first off, all of you here is always amazing, I know how far everybody travels. I really have to give a very big thank you, it is a little bit of a love fest between me and my daughter, but Ellie always is here every year and she shows up and she’s very humble and we look at her and you think, “Wow, does she have NMO?” And she doesn’t really talk about the 16 episodes she’s had of transverse myelitis and the optic neuritis, and truly, more than anybody in this room, really understands what you’re all going through.

Victoria J:

But today is a great day, because it is 10 years later. I am thrilled to see new faces, old faces, everybody here and together. And this is Patient Day, and this is different this year in the sense that this is really, really all about you. There’s been no two days of researchers and distractions, it’s been all about this day for you. So normally I never read from a prompter, but let’s call it, this is our NMO State of the Union, right? So it’s been 10 years. So the first part of my little talk here is going to be about … because there’s so much truth really that I want you to know about what’s going on, what the foundation does and what we’ve been doing for 10 years, because I want you to, by the end of this day, really have learned so much about and feel as positive as you can possibly feel about all the work that’s going on.

Victoria J:

So the first part of this talk is a little bit about, as head, speaking from my head of this foundation. And then I think I’m really going to try to see if I can really help speak even more from my heart. So, with that being said, let’s talk about what we’ve been doing for the first 10 years here of research. So where am I going to go? All right, can we go to my first, “Let’s not kid each other here,” because solving a disease, it takes a lot of money. And every year my husband, he hates that I do this, but you know what? I’m going to make him stand up, Bill Guthy in the back. Okay? So he hates that. Every time as I’m driving here, he’s going, “Please do not make me stand up.” And I say, “Okay, honey, fine,” and then I make him stand up. Because you know what? $50 million is a lot that it takes for a rare approach to a rare disease. And this is the mission to cure NMO. I really need to personally thank him again for all of his love, his generosity and his support. And we all together in this room need to do what we can do to help solve NMO.

Victoria J:

So, based on firsthand experience, one of our first priorities as a foundation was to do all that we could do to make sure that no patient or family ever feels alone or really faces the fear of the uncertainty that we all know comes with NMO. So what I’ve tried to do is brought together as many resources as possible to the table to really help as quickly as possible, because time is critical.

Victoria J:

So we created the NMO patient guide, it’s now in its third edition, as a real life resource for patients and families, equal parts information, inspiration. It’s 300 pages and people call this their NMO Bible. And I can tell you, those of you that have seen that resource guide, everything I try to do is find the best picture I can find that’s more uplifting than all the depressing things that are out there. So really I’m proud of that book. And since then, a lot of other different conditions, they’ve said, “Well, this is great. We need to put a book together.”

Victoria J:

We also created the user-friendly advocate toolkit called NMO, MS, What You Need To Know, and it’s now been published in seven languages worldwide. That’s pretty great. So that helps a lot in the diagnosis of doctors knowing. I’m sure all of you have dealt with showing up somewhere and people are like, “What’s NMO?” This is in emergency rooms, hospitals, doctor’s office, so people can really make that critical diagnosis. We also built the Connect The Docs, it’s the global directory of hundreds of physicians who know NMO and how to best help patients and families worldwide, because connecting people is essential. So that you pretty much, at this point … when I started, you didn’t know where to go. I didn’t even know anybody else in the world who had NMO. So this was critical, you can travel now anywhere in the world and in those books and on the app, it’s going to tell you a doctor in that city that is familiar with NMO and treating NMO.

Victoria J:

So today, as Ellie said, we’re hosting our ninth annual NMO Patient Day. And next month is actually going to be international NMO round table conference, that’s next month. And we have such dedicated experts around the world. We’ve formed the International Clinical Consortium, this was a really big undertaking. Today it has more than 90 members in 30 countries. I mean, let me just restate that. 90 members in 30 different countries are focused, and all these flags back here, are focused on working on the world of NMO. Because seeing NMO from more than one perspective is key to creating new possibilities for cures.

Victoria J:

But meeting together is not enough. And unless we all act together in this room and with a real life sense of purpose and urgency, that’s critical. Lives are on the line. Each one of you in this room, and I stress this every year because it’s so true, and as you go through the day you’ll understand more and more why; each person in this room is a critical piece to the cure. I can’t stress that enough. And we’ve had to be very bold, we’ve had to go way, way outside of the box. And even though there are critics, and though there is … through our amazing collaboration, we put this International Clinical Consortium together. Our advisors have published dozens of state of the art articles to rethink dogma and spark entirely new ideas to understand and solve NMO. We really had to think outside the box and bring in people that are in all different facets of not only NMO, but working on different things, and look at this in a different problem solving way.

Victoria J:

One of those papers rewrote the book on NMO diagnosis, the diagnosis itself, making it clear that NMO is not a variant of MS. And in doing so, helping both NMO and MS patients, they are receiving now more and more accurate and a rapid diagnosis, and that’s critical, to receive the best medical care as fast as they can. So let’s give a hand to that, I mean just …

Victoria J:

The new diagnostic criteria have resulted in a 50% increase in the number of cases recognized around the world, and the current data suggests there may be hundreds of thousands of NMO patients in total. That’s an extraordinary number. And not that we wish that for everybody, but I know that when I personally started, the Mayo Clinic said, “Well, there’s probably one in a 100,000.” Now it’s probably one in 10,000, and hundreds of thousands of people around the world. And why is that important? Because it helps the conversation, people are looking more at this disease and spending more time and focusing.

Victoria J:

With more than a dozen leading researchers and institutions in North America, we created the Circle Study. This is the largest NMO biobank of data and biospecimens built to drive lifesaving discoveries that patients and relatives have within them. Today we have enrolled more than 1000 selfless patients into Circles. That’s a big milestone. Having collected millions of data elements and more than 50,000 blood samples for research, just think about that, 50,000 blood samples we have brought together. And not only that, the data that goes with it, which is critical. Everything has been standardized in a way that the medical community is not used to, and people are taking note of that. Thanks to all, that is part of your effort. Again, everybody in this room is a piece of that cure.

Victoria J:

We also reinvented the grant application and review process, blending a quantum leap academic process with a business model that really rewards breakthroughs. And over the past decade, there’s been many Guthy-Jackson affiliated researchers who’ve published hundreds of scientific and medical articles that truly have transformed the field of NMO and provided the basis for new drug targets. And you’re going to learn about those new drug targets today.

Victoria J:

And speaking of new drugs for NMO, one of our main goals of our mission was to accelerate the first ever clinical trials to find safe and effective treatments for NMO. And I’m proud to say that today there are three phase three clinical trials nearing the finish line, and more are coming. So that’s pretty awesome. In the next 24 months, we are hopeful there’ll be at least one approved therapy for NMO. All right? Let’s all keep fingers crossed. This great advance gives us a chance to go even further, to reset the immune system, to cure NMO once and for all. And just over a month ago, we held our summit for NMO tolerization. You’re going to learn more about that today. And I’m pleased to say that we’re supporting the first tolerization study in NMO.

Victoria J:

I want to express my thanks to our NIH and industry partners, they’re new to us, I couldn’t say that a few years ago. They’ve invested in NMO and our mission for cures, sharing our view that NMO is the little disease that could open doors to solving many autoimmune disease. So we’ve really tried to be a home, a lighthouse, for NMO patients and families by creating and delivering an interactive resource of multimedia for education, advocacy, and support. Our website holds the richest collection of information about NMO anywhere, and our NMO resources app, which I hope you all have, if you don’t, get it, is a powerful mobile companion for patients, caregivers, doctors, and everybody.

Victoria J:

And as important as all the new scientific and medical facts and figures are, so is the power of love and intention. We’ve produced a powerful and inspiring collection of short films delivering our message and our mission, reminding us all that hope is real and it’s healing. I’ve loved working on all of those films. Our message has spread like a revolution around the world. You’re going to learn today about everything from Ali to Mali, where we just hosted the second Pan-African Congress for NMO last year. And you’re going to hear about that more later today and see a great film. It was wonderful to send a crew from Kenya and Nairobi to Mali, and of course, me and my little marketing, I had to go, “Well, Ali to Mali.” So we did a little film, it was very impactful. And today is the first NMO Patient Day in Australia. Yep. And later this year, we’re supporting the first conference in Russia and beyond. We’re building those bridges.

Victoria J:

So, beginning just a decade ago, we set out to create a rare approach to a rare disease. And when we hear experts ask how we’ve done it, so much, so fast, we’ve been fortunate, and I tell them, “Well read my new book, The Power of Rare: a Blueprint for a Medical Revolution, which we just published last year. Each of you today, you have a copy in your bag. It’s an amazing story, it’s the strategy that’s now being used to solve other rare diseases, and some that are not so rare.

Victoria J:

So … thank you. So I want to leave you with this last thought. 10 years ago we began this foundation against all odds to solve this complex and rare disease. Ali and I wrote our book, Saving Each Other, as a wish and a prayer that we would find a way. I said earlier that we have walked this road with you every step. The truth is that we could not have done this without you, from clinical trials to Circles to the new science and medicine that is changing lives for the better, and now here with you today, saving each other and always moving forward to a cure.

Victoria J:

So now let me take a moment to speak to you from the heart of a mom. You have all seen me stand up here for the last 10 years, and you’ve heard me say many times, if somebody would have told me as a woman who didn’t go to high school, didn’t graduate college, was in the beauty business, making a lot of beauty products, would be standing here before you today, 10 years later, I would have said, “No,” as trying to solve a rare autoimmune disease. But I do know, and I’ve learned so much, and as I always look out at all of your faces, you inspire me. You keep me going every day when I’m sitting in those meetings and I’m making those tough decisions. I want all of you to know I never take that lightly. I know that the decision I make, whether I’m sitting there about to undertake, which we are, a big biomarker study with Verily, which is part of Google, whether I’m sitting there with the pharmaceutical companies, I always put myself in everybody’s chair and try to make the best decisions. I really, really do.

Victoria J:

My heart and my love … you know, people always think, “Well what is Ali doing?” Or, “Is there a special pill that Ali takes?” And, “You all have a lot of money, and I’m like, “I don’t have a golden pill for Ali. I wish I did.” I wish I had the magic for all of you. But I know that my heart is full of commitment to stay the course until I’m not standing up here anymore because we’ve found a cure and everybody can go home and live a happy life.

Victoria J:

And in that spirit, today is your day. This is a day that I want you to really immerse yourself in asking the questions, ask the experts. You have to really be your own advocate. I know that this is one of the hardest challenges in your life that you’ve been presented with, but we really all are here together, and being together really matters. Look at the people to the side of you, next to you, the new people that are in this room, the new friends, the old friends; support yourselves. You’re going to learn more about how you can support the foundation too, which is really critical because my husband and I have been doing the work for a long time, but we need more of … not only just financial support, but we need the support of others around the world that are in this room to help carry the torch and get the messaging out. It’s really, really critical to do that.

Victoria J:

So we have a lot planned for today, it’s a busy day, there’s some amazing people in this room. I always have to, especially 10 years later, thank everybody from the foundation, from Jacinta and Dan and Derek and Megan and Renee. And I know I’m going to forget somebody here, every single person that’s shown up, all the volunteers, my family, my husband, my daughter, my other two children. I’m now a grandmother. I wasn’t a grandmother when I started this. So my whole … thank you. Yeah, so my whole family.

Victoria J:

So, with that being said, I want to introduce Dr. Michael Yaman, who I have to think probably more than anybody in so many ways. He has always been by my side, in every meeting, whether we’re still … it can be a little intimidating when you’re walking into some of these rooms, and I have to tell you, you guys would all be so proud because he is honestly always the smartest man in the room, whether with we’re with all these smarty pants at Google and their life sciences buildings and they’re in their hoodies and big foreheads and I’m like, “Oh.” Michael comes through.

Victoria J:

And we are going to be side by side again, coming up next month. Some of you know, we were invited two years ago to the Vatican, and I didn’t get there, but they gave us another chance. The Pope has invited me to come and speak next month. Yes. So Michael and I will be traveling to Rome to go to the Fourth International Vatican Conference, to Unite Cure, it’s a global healthcare initiative, and talk about having a conversation for our blueprint for a cure. And I can tell you that when we are there and we will be fortunate enough to have an audience with the Pope, I will take and bring all of your blessings, take all of his and put them back to you and just be so proud to be standing there. So, as my fellow blueprinter, who helped me write that book of 10 years here, I would like to welcome to the stage Dr. Michael Yaman.

 

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