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A World of Cures – 2018 NMO Patient Day

Victoria Jackson:

Hey there, welcome back. I hope everybody gets some benefit out of some of the sessions today. Yes, hopefully. Everything goes online, so if you miss something, you’ll be able to watch it online. We’ve had some great ones from years past, so you can always go and look back through those. I wanted to take a few minutes and then we’re going to continue on. But I always like to be able to open it up for a few minutes if anybody has questions because sometimes I can’t reach everybody. Anybody who has any thoughts or questions or comments or wants to share something, this is a good time. Anybody, can we see-

Audience:

We love you.

Victoria Jackson:

Thank you. Thank you. That’s a beautiful way to start. I love you back. Thank you. You really have no idea how much I love, adore and appreciate all of you. Your faces are embedded. Okay.

Audience:

[inaudible], if that’s okay.

Victoria Jackson:

Okay. So-

Audience Question:

Hello.

Victoria Jackson:

Hi.

Audience Question:

How are you, Victoria?

Victoria Jackson:

Hey, how are you?

Audience Question:

I asked you this question last year, but there are many more caregivers today here. Can you give us your perspective as a caregiver to your daughter, Ali?

Victoria Jackson:

Boy, all of you caregivers, you know how it is, and everybody who is dealing with NMO in the world, it’s hard. I’ve spoken to a lot of you, the moms today, and as I said, first part of this conversation was really today giving you a real download about from the head of the foundation. But my heart is really what always guides me and my power of love and intention for my daughter, now nine years later for all of you. It really does and it’s really hard. I still, every day, am always afraid my phone’s going to ring and it’s Ali and maybe, did our luck we’re out for the last couple of years and she’s having an attack or … I don’t think I ever completely just stop holding my breath a little bit, for sure. I’d be lying if I said, oh, I have it all perfectly handled because I don’t. It definitely, I’m sure for a lot of you. It’s not a, oh, why always me? It’s just part of what goes along with it.

Victoria Jackson:

I know for me, sleep was a big deal. A lot of Ali’s attacks were in the evening. For a few years, I really had a problem sleeping because she wouldn’t want to necessarily wake me up in the middle of the night when she was having an attack, so I would keep myself awake to go walk down the hall to look under the sliver of the door to see if her light was on, that meant she was maybe having an attack. There’s a lot, we all have our stories. But I found my own things that helped for me, which is surrounding myself with amazing friends. I have great pals and some of them make me laugh a lot. I’ve been fortunate enough to really be in the company of some amazing women. I try to meditate, I try to just clear my head when I have to and … whatever works that day is my recipe. Thank you.

Andrea Mitchell:

Hello. This is Andrea Mitchell. I just want to say thank you for all that you and your family do. A quick question.

Victoria Jackson:

Sure.

Andrea Mitchell:

The Power of Rare book, is it available on audio?

Victoria Jackson:

You know what? It is not and it’s going to be. We literally just finished the book and we wanted to get it out quite frankly in time for our visit coming up to the Vatican, so it will be. I really didn’t even realize how much trying to take 10 years of research science and bringing it down to a place where everybody could follow and understand. But yes, to answer your question, it will be. Thank you. The proceeds, by the way, Michael and I are going to talk about this in a little while when we talk about our lead campaign and things that you can do to help us. All the proceeds, everything, as I always have said, everything that’s ever donated to the foundation 100% goes to research and science. Nothing ever that’s donated … Bill and I, we have nothing to do with it. All to [inaudible 00:04:36] 100%. Thank you.

Victoria Jackson:

It’s the same for the books. My co-writer over there, Dr. Michael Hayman, it was amazing just for us to sit down and really look through the people that are now reading the book in other autoimmune diseases. It’s part of what helped us get another nice little invite back to the Vatican, so thanks. But we will do an audio version. Anybody else? Okay.

Victoria Jackson:

All right. I want to talk a little bit about … this is where we’re going to go global a little bit here. Really thinking about a World of Cures. In the last 10 years, the world of NMO has, it’s really undergone a transformation and one for the better, which is something sometimes it may be hard for you to see, but it really has because now with thousands of patients and caregivers and families and scientists, clinicians, industry, government partners, we really have created a global mission for cures. When we look at a problem together from many different viewpoints and in many different languages, we can find a better way. You need a lot of people in the room. For example, the new international diagnostic criteria for NMOSD. It’s really provided a better way to tell the difference between NMO and other diseases like MS. This is critical for patients being diagnosed.

Victoria Jackson:

This has helped NMO and MS patients really receive that more rapid and accurate care and diagnosis. I hear so much from the stories from all of you, how first you may have been diagnosed with MS or given the wrong diagnosis. So, that’s really changing now for people recently being diagnosed. But, the world of NMO has also become much bigger. Our research has revealed many more patients than ever were known. Today, the latest data, the estimate is somewhere around 500,000 NMO patients worldwide. So, instead of, as I told you earlier, the one in 100,000 the Mayo Clinic first gave me when I started, the numbers were really closer to one in 20,000. Obviously even though we’re not happy that there’s more patients, we’re really relieved to know that they’re more likely to be known and treated and saved. In other words, NMO patients may be rare, but they’re not alone and knowing that brings hope. Our message of the Power of Rare has gone global, from Ali all the way to Mali.

Victoria Jackson:

I should tell you, last year we hosted the second Pan-African Congress for NMO. We wanted to share this video with you as a reflection of all we’ve done together to spread the word for cure for NMO. If we take a look at this video that would be great.

Kadidia Koulibaly:

Lower limb weakness. I cannot even walk. Vision problems…even when you are in front of me now, I do not see you.

Dr. Dorlan Kimbrough:

Rare diseases oftentimes aren’t necessarily priorities, when there are so many other things that are more common and get a lot more research funding. Because NMO is relatively uncommon, it causes a lot of suffering and it’s something that really profoundly affects people’s lives.

Dr. Charfi Chahnez Triki:

We have a big lack, in regards to the statistics for NMO in our region.

Dr. Mustapha Ndiaye:

NMO could become a much more focused disease in our activities, in our thoughts, and in terms of our research.

Dr. Seydou Doumbia:

We do ave about 15 neurologists for about 17 million people.

Dr. Najib Kissani:

We had very few cases reported about NMO, especially in countries and regions where the awareness is not well-accomplished. We should have 26,000 cases in Africa, but unfortunately, we are just only 260 cases. Since that, we decided to organize the first meeting in Morocco with the support of the Guthy-Jackson Foundation.

Dr. Christian Napon:

This conference is very important because it brings to my attention this pathology which is often under diagnosed. By multiplying these meetings and by training people, we can form a better approach to these types of pathologies.

Dr. Youssoufa Maiga:

We went from a few guests in Marrakech to a conference of more than 300 guests today. All parts of Africa are represented here. African countries are beginning to talk to one another and develop the NMO African Network. We have expanded that number of neurologists networks that are interested in NMO.

Dr. Seydou Doumbia:

Neuroscientists who have been trained in France, in the US and also in the region, those are our hope for some of the disease.

Dr. Dorlan Kimbrough:

There’s a real spirit and real hunger for collaboration and for furthering NMO research here. In general, it’s hard to do research with relatively small numbers of patients, and that’s one of the benefits of having the collaboration with the Guthy-Jackson Foundation because then, if one group has 40 patients, another group has 10 patients, we can all pull our efforts and try to better understand it that way.

Kadidia Koulibaly:

With my family, with my friends I bear my disease well, I have no problem.

Dr. Callixte Kuate Tegueu:

These patients are suffering and we have to diagnose and then help them to find a solution to their problem. So we should fight for that.

Victoria Jackson:

You really can see we are going around the world and we’re just going to keep going. I really believe there’s no accidents. It’s interesting how sometimes I just think the universe works. When Ali Was in junior high school, she was doing a project with the UN and every student was given a country that they were going to represent. Ali was given Mali. So it was just so interesting that here then all these years later, it’s now Mali is representing Ali, and I’m making this little video and talking to all of you.

Victoria Jackson:

But also what’s interesting how the universe puts things together is there’s a gentleman who’s going to come up and speak to you now, who went and made that video. He has been working with the family for a long time as a friend and helping us out with different things. We were talking and he said, “I would love to be … this is about how everybody can be involved in ways they don’t even know. He goes, “I would love to be your global ambassador, one of them. I would like to go to Mali and do this piece and cover the story and cover the conference.” He went on our behalf. He had no idea, because I didn’t want to freak him out at the time, that when he got there, he was also going to be meeting the president of Mali and going to the palace. But he did an extraordinary job. He is a dear friend and he has a story to tell. I’m very proud to announce and welcome to the stage, Maolude Fall Toure.

Maoloude Fall Toure:

Thank you. Well, where do I begin? My name is Maoloude Fall Toure. I was born and raised in Senegal, West Africa. Now, I am a United States citizen and I serve in the US armed forces. Thank you. Bamako is the capital of Mali, which is located in West Africa. Just weeks before the conference, there was a terrorist attack in Mali. So the conference was going to be canceled because foreign embassies was telling citizens not to go there. But there was nothing in the world that will prevent me from completing my mission to fight against NMO. Even if there were NMO conference in Syria, I would go for all of you guys. Thank you.

Maoloude Fall Toure:

I was honored to represent the foundation as a Guthy Jackson family ambassador for the second African NMO meeting, which was a big success in the fight against NMO. Almost all the countries that participated did not know much about NMO. Thanks to these conference, the neurologist from 20 African countries and 480 participants were able to learn about NMO and how and where to get more information. Thank you.

Maoloude Fall Toure:

With the support of the Guthy-Jackson Charitable Foundation, this was made possible. Before this conference, the president of Mali and the minister of health were not aware of NMO and the growing number of NMO patients, specifically in Africa. I had the opportunity to visit some patients at their homes. It was heartbreaking, talking to them and their families, hearing their pain and their stories. But, after telling them a short story of Ali Guthy with NMO, it gave them hope and relief that they are not alone. That there is a family thousands of miles away who never came to Africa, but yet are working day and night with an elite scientific team to find a cure.

Maoloude Fall Toure:

The videos of Victoria and Ali showed at the conference were motivational videos. The audience really understood the message, heart were trembling with motivation. When people read the cover of Saving Each Other, they couldn’t wait to read the rest of the book. The foundation has done so much, so much that even the president of Mali was amazed. All the NMO experts at the conference couldn’t finish their speech without mentioning the foundation because it’s the beating heart of the fight against NMO.

Maoloude Fall Toure:

The president of Mali, the minister of health, the minister of higher education and research, patients, scientists, doctors, and the students couldn’t thank enough for the foundation for all their work and continued support. The attendees we’re very, very, very grateful to have such brave and courageous women as Victoria and Ali. For the funding and the love of the husband and father, Bill. Thank you.

 

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