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The Foundation with Kathy Najimy Part 2

Kathy Najimy:

How did you reach the scientist and doctors? I would know my doctor, my friend Robin’s doctor and maybe one other. How did you reach-

Victoria Jackson:

Well-

Kathy Najimy:

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 just went and talked to anybody that would listen and find the specific antibody that is, plays a huge part in NMO is something sort of like isn’t going to mean much to anybody. But it’s something called aquaporin four. And 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? It was literally just looking at every single piece as I would learn more science, I’d go, Oh, Oh, 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.

Victoria Jackson:

And I literally started putting together a team of advisors and the smartest people in the room that would talk to each other. The biggest thing I had to do, Kathy, in this kind of 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.

Kathy Najimy:

Right.

Victoria Jackson:

In a rare situation that blood of a patient, of NMO patient, is liquid gold.

Kathy Najimy:

Right.

Victoria Jackson:

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 I want you 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. I wanted to put around me a lot of really nurturing people that were smart and scientifically room 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 that it … 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, you know what, 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.

Victoria Jackson:

They’re putting their brain power and their expertise together and it’s mandatory that they all share.

Kathy Najimy:

Wow.

Victoria Jackson:

Everybody has to do that. And I find very creative ways to do that. For example, I’m fortunate enough to have a ranch. I just brought 30 researchers and scientists to the ranch, locked them in there for three days and said, no one’s going home til we start getting closer in finding the cure. And I fed them all guacamole.

Kathy Najimy:

I know. I was going to say that there are avocado ranches. Avocados everywhere.

Victoria Jackson:

All of a 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 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.

Kathy Najimy:

Okay.

Victoria Jackson:

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 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-

Kathy Najimy:

Yeah.

Victoria Jackson:

Because for the first time I’m giving a face and a name-

Kathy Najimy:

Name.

Victoria Jackson:

To this condition.

 

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