Kathy Najimy:
Hi, I’m Katie Couric, that’s a lie. I’m lying, I am Diane Sawyer. What? No, I’m lying again. I am Kathy Najimy and I am here today because last year I met a woman, a mom who actually changed my life. Actually not true again, lying again. The very first time that I saw her was one on one of the very first makeup infomercials ever, I was transfixed. She was funny, she was glamorous, she was well spoken and thoughtful, and she was eye line to the T, beautiful and her name is Victoria Jackson. Hi Victoria.
Victoria Jackson:
Hi Kathy.
Kathy Najimy:
Now I know you as a great friend and to me and our sister circle of women that you brought to together but most remarkably as one of the most inspiring, miraculous, dedicated moms that I have ever met. You have a daughter, she’s 17 now, Ali.
Victoria Jackson:
Yes.
Kathy Najimy:
I have met her, she’s gorgeous and she kicks ass at Boggle. And what happened when she was 14, 15 years old?
Victoria Jackson:
All of the sudden literally we were on a family vacation, she’s about 14 and a half and we come back, we’re in the car and we’re sitting there and she says, “Mom, I have this eyeball headache. And I feel like I have a headache but it feels different, there’s something wrong and actually things are starting to get blurry.” So I go to the doctor. He basically examined my daughter who now her vision is getting worse and worse.
Kathy Najimy:
You were probably freaking out.
Victoria Jackson:
And I’m freaking out. Now she’s still having the eye pain, she’s literally almost becoming now blind in the one eye and we get the results back from the blood test and it says positive for NMO. And all I hear next is the doctor who originally sent me to the neurologist says, “You know what? Your daughter has NMO, which is neuromyelitis optica she’s probably going to be potentially gone in the next four years. She’s going to be quadriplegic, blind, paralyzed.” Because NMO, neuromyelitis optica, attacks the optic nerve which results in blindness and the spinal cord which results in paralysis and it’s like your body is attacking itself and eating away at the myelin sheath which protects all the nerves and it was just, that was the game changer right there, that was when it all just changed forever.
Kathy Najimy:
What is the progress? You talked about how when she was 14 she didn’t really know about it and then later on when you started getting your foundation together and meeting with the doctors and getting a few answers and piecing together a puzzle that was giving you some awareness of what was happening. What’s the change like? Is she now more into it? Does she want to know how? What’s her reaction to it? Tell me about what a day is like for her.
Victoria Jackson:
There’s been this extraordinary metamorphosis of Ali where we started with when she wasn’t sure what was going on and she’d be watching Mystery Diagnosis on TV going, “I think I have Reiter’s syndrome,” to not wanting to know, to now not wanting to still be the poster child of NMO, she doesn’t want sympathy. She wants to be the girl who’s going now through her last year of school who wants to be the captain of the tennis team, the editor in chief, who has gotten the straight A’s in school. But she looks at it like, “You know what? NMO isn’t going to define me. It’s a lifestyle mom. It’s a condition, it’s a thing I have, but I’m still going to live my life.” And I know it’s hard on her. You can’t still not wonder. She said when she first found out, when she saw some papers, she saw some papers on my desk that said NMO and she said, “Is that what I have? What? What’s an NMO?”
Victoria Jackson:
And then we sat down and started to talk about it and she went to her doctors and said, “I want to know how long do I have? How long do I have before I’m going to be blind and paralyzed? I need to know.” And the doctor said, “Ali hopefully that’s not going to happen but the answer is we don’t know.” And I can see still now in Ali the girl who’s going to do it all, she’s cramming it all in. She wants to do whatever it is she’s going to do, she’s just full on doing it. Because I know there has to be that part of her that, “Well, what if I won’t be able to ever play tennis again? What if I won’t be able to do that?”
Kathy Najimy:
And it’s so hard to be a teenage girl just to be. And so, she’s carrying on with her life because I have met her and she’s fantastic and funny and great. And I see her carrying on with her life and knowing that there is this thing looming but it hasn’t seemed like it has stopped her. It doesn’t seem like someone who’s given up. So she has your strength like whatever perseverance that you have, that crazy miraculous thing, it seems like she has it too because now she’s even speaking out about it, right?
Victoria Jackson:
She’s speaking out about it. We’re being honored and she’s like, “Why are they honoring me?” And I said, “Ali because for a lot of people you’re an inspiration that you are dealing with what you’re dealing with in you’re doing your thing and you’re living your life.” And it’s really bonded the two of us together where normally at this age mother, daughter going through their teen angst and everything else we’re joined at the hip on this. And as she turned to me and said, “You know what mom this isn’t just about you and I anymore this is about something much bigger isn’t it?” And I said, “Yeah Ali I guess it is. Neither one of us signed up for it, we didn’t want it. But yeah it’s probably not just about just you and I anymore.”
Kathy Najimy:
How did you reach the scientist and doctors? I mean I would know my doctor, my friend Robin’s doctor and maybe one other. How did you reach 50 and 100 top scientists and surgeons and doctors? Where did you begin?
Victoria Jackson:
I walked in and they told me while I was on the way to the Mayo Clinic there’s only one man who knows anything about this. I thought, “Oh my gosh, not only do I have to create and put this white light around my daughter I have to put it around Dr. Brian Weinshenker at the Mayo Clinic. Because what happens if he gets hit by a bus does that mean nobody in the world is now going to be ever cured because only one guy knows?” And literally I started with him and then I just started to reach out to all the universities, to different neurologists.
Victoria Jackson:
I mean I just went and talked to anybody that would listen and find the specific antibody that plays a huge part in NMO isn’t going to mean much to anybody but it’s something called aquaporin four. And so I thought, “Okay, I’m going to learn everything about aquaporin four. Who knows about it? Who studies it? Who works with it? How do we stop it?” I mean it was literally just looking at every single piece of as I would learn more science I’d go, “There’s something to do with T cells. Okay, all right, I’m going to find the best T cell person. Oh, B cells are involved oh okay the B cell.” And I literally started putting together a team of advisors and the smartest people in the room that were talked to each other.
Victoria Jackson:
The biggest thing I had to do Kathy in this work is when you have a rare orphan disease and you’re funding research, I didn’t know this before but I hadn’t really thought about it, you need the material, the blood to do the research with. So in a rare situation that blood of a patient, of an NMO patient is liquid gold. So I started a repository which I’ve never done anything like that where literally I have a nurse that will go anywhere in the world to collect blood from any patient who has NMO to help further research. I’m about to launch the first ever where I am paying and this is all I will pay for every single patient for any blood draw I send it, there’s no fees. For genetic testing I pay for any patient literally worldwide that has NMO to get that information for a cure for everybody.
Kathy Najimy:
In the midst of this emotional turmoil and dealing with your daughter, dealing with your family, going through all the feelings you’re having, that she’s having, and then reaching out, going to the Mayo Clinic, getting scientists and doctors and making a symposium you’ve also managed to start a foundation. And so, I want you to tell us about the foundation.
Victoria Jackson:
Well, I knew the foundation was going to have to be made up of people that were much smarter than I am in terms of in the world of science. So, I wanted to put around me a lot of really nurturing people that were smart and scientifically were going to help give me the Science 101 lessons that I needed in all of the different areas that I was going to have to learn about. Understanding what NMO does and the symptoms. Why, what is it doing? How do you counteract that? It’s been an extraordinary journey just the amount of people and the amount of smarty pants that have come together in a room around it. Because they are from other fields looking at NMO and thinking if we … They look at my foundation as this is the little foundation that could, can, and will and it will make a difference for these other bigger conditions that they’re working on. So, they’re putting their brainpower and their expertise together and it’s mandatory that they all share. So everybody has to do that and I find very creative ways to do that.
Victoria Jackson:
For example, I’m fortunate enough to have a ranch. I just brought 30 researchers and scientists to the ranch, lock them in there for three days and said, “No one’s going home till we start getting closer and finding the cure.” And I fed them all guacamole and all of the sudden they’re talking to each other. And I’ve put together the first consortium which is where Mayo Clinic, John Hopkins, UT Southwestern Stanford, they’re all working together and putting all their patients together to actually start looking at it in a very different way.
Kathy Najimy:
Now I assume that there’s a website. Do you use the foundation to disseminate information, to reach other people who have it as well as doctors? Tell me about the foundation, how I can find it and what you want it in your heart to be used for.
Victoria Jackson:
The Guthy Jackson Charitable Foundation is there really for to support and be on the cutting edge of all the science, it’s a support and to help support the community of patients who have NMO.
Kathy Najimy:
If I’m a patient who has an NMO what do I do?
Victoria Jackson:
If you go to my website it will recommend we have patients all do Connect the Docs it’s called and all the doctors that have an expertise in NMO all over the country, all over the world we have on our site. And it’s basically I want this site to be a resource for anybody with this and to help other researchers from other countries. My next symposium I’m bringing researchers from all over the world to come to help in working toward finding the cure. But it’s also a real community for patients to support each other.
Victoria Jackson:
When I had my last symposium and I literally on the day and I brought all the patients in and I said, “I’ve paid for anybody who wants, there’s nurses and doctors in the other room to do any blood draw.” Every single patient went in there and said, “No, we want to pay for our own blood draw because we want you to keep every dime and keep doing what you’re doing for the research.” And even though I had paid for each one of them they all wanted to pay because they’re so extraordinarily grateful because for the first time I’m giving a face and a name to this condition.
Kathy Najimy:
You’re giving some hope to this condition and like I said before when I went to your first symposium that was the thing that struck me the most was the individual stories and just the gratitude. Even though it’s a horrendous thing to have happened to your family the gratitude that there were like minded people who were caring about it, who were using language that fit with their child, their son or their daughter had that you were standing up there this beautiful woman saying, “I am going to help you. I have some hope. I have a way to get some information.” And just the stories that came out I just felt this outpouring of gratitude and like, “Yes my son has that too and for five years they were saying that it was this.” Because I guess some of the doctors there aren’t really as educated as they need to be about.
Victoria Jackson:
Yeah they don’t know about it and I remember people were saying to me, “There are people here that are praying for you Victoria that you will stay strong and stay focused and find the cure.” And all of a sudden you feel like, “Oh my gosh, not only am I trying to do this for Ali I have all these people.” That’s what this has been like this journey of NMO. It’s like all these different people’s stories, these people that I would have nothing to do with in my life that I know nothing about and somehow we’re all interconnected in this crazy journey and we’ve come together and now we’ve got to find the answer. And I’m not going to stop Kathy till I find the cure and it’ll be the benefit for my daughter and for everybody who has it.
Kathy Najimy:
So, what you’re saying is the research and discoveries that have to do with NMO, this orphan disease, this will link with other diseases, bigger diseases that we’re familiar with a lot and we’ll unlock some answers to some other things.
Victoria Jackson:
It’s absolutely going to change. What I’m doing and the blueprint I’m creating in the cure for NMO as a rare orphan condition is going to change the way we look at medicine and it’s going to unlock the mysteries, some much bigger conditions that affect a lot of people. And I’m not going to stop and it’s my new mission in life and it’s just I’m going to figure it out.
Kathy Najimy:
How do you persevere? I mean do you have a faith base? What is holding up this miraculous thing that’s happening?
Victoria Jackson:
Well, I take every little bit of what I need to get me through the next day so whether it’s chanting or my faith in something or a belief or I’m just exhausted because I’ve burned out so many brain cells just trying to keep up I just look at my daughter. And I just go, “That’s it, that’s what says okay you know what keep on going girl,” because that’s what it’s all about.
Kathy Najimy:
I know you and I both think this that women have a strength that is incomprehensible. And I believe that it’s that unnameable strength that women have, that mothers have, that you find a way. You not only find a way to do what you have to do but to keep yourself going and keep yourself together with a spirit or a faith that you had no idea.
Victoria Jackson:
That’s whatever you have to do, wherever you have to dig deep. And I say even with my husband it was really hard for him. I think he didn’t quite know where to go and said, “I’m going to have to do what I do and you’re going to have to do this and take the lead on it.” And I went, “Okay obviously maybe everything up to this point has prepared me for this.” I mean learning things and being exposed to things that I never even thought I would ever have to learn or understand. Understanding what NMO does and the symptoms that it, why, what is it doing, how do you counteract that? It was an extraordinary, just it’s been an extraordinary journey.
Kathy Najimy:
Finally, can you tell us what so far the work that you have done has resulted in? Have there been new findings and things that they had no idea? What kind of hope are we looking at?
Victoria Jackson:
I am very hopeful. There’s some science on the horizon that if I probably went into your head would spin because it’s so, so much of what this foundation is it’s all about dense research and science. It’s not about galas, [crosstalk 00:16:30] it’s not about fundraising, it’s not about, it’s really all about science to actually find a cure.
Kathy Najimy:
Do you feel like it’s going forward?
Victoria Jackson:
I do. I absolutely feel like it’s going forward and I think there will be success and I really think there is light at the end of the tunnel. And I guess it’s always that you feel that race against time like you think that because in the world of NMO if you can stop attacks you can stop the disease.
Kathy Najimy:
If somebody wants to know more about this they go to your website?
Victoria Jackson:
Go to the Guthy Jackson Charitable Foundation Website and we love, I’m doing all the funding but donations are always happily welcomed. But there’s a lot to learn about the science, I’ve done a lot that will show doctors from the Mayo Clinic talking about the differences of NMO and MS and there’s a lot to be learned and a great support for patients.
Kathy Najimy:
So, school yourself people, school yourself on this. It’s a really important disease. Obviously it is happening to my friend Victoria Jackson and her beautiful daughter Ali but it’s happening to kids and grownups all over. And if there is no information then there’s very little hope. But, because of my friend’s extraordinary courage and spirit and strength I hate to wrap up cheesy like this but the truth is that there is hope. So, if you can help in some way we welcome you. Thank you my love.
Victoria Jackson:
Thank you.