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From Mascara to Medicine: A Mom on a Mission

Victoria Jackson:

I could have never predicted the course of how my life is going right now, but my daughter Ali was all of a sudden unexpectedly diagnosed with NMO. She basically just one day she said, “My eye is really hurting.” And what turned out to be eye pain that didn’t go away, that turned into blurry vision, that turned out to be a diagnosis of optic neuritis. And then a very astute doctor said, “Well, but why would a seemingly healthy 15-year-old girl have optic neuritis?”

Victoria Jackson:

A NMO IgG blood test was ordered. I remember at the time when the doctor ordered it, I said, “Oh, what’s that a NMO?” And he said, “Oh. You don’t even want to go there.” And when it came back positive, I was, “Well, what’s NMO?” And one of the doctors that I was working with at the time said, “Well, it’s bad Victoria, and you could probably have four years with your daughter before she’s going to either not be here, or be blind and paralyzed.” And my whole life just changed in that second.

Victoria Jackson:

I went to see Dr. Brian Weinshenker at the Mayo Clinic and he really was extraordinarily kind and patient. And I said, “Are you doing any work in this area?” And he said, “Well, yes.” I said, “Do you have a foundation in research?” And he says, “Well, I’m wanting to and I’ve started. I’m doing some.” And I’m, “Well, you and I are going to be working together. I’ve got the checkbook, and you’ve got the brains for this, and we’re going to get together and we’re going to do something. We’re going to find a cure for this.”

Victoria Jackson:

After we were given the diagnosis, and the doctor said, “Well, if my child had this, I’d be going to the Mayo Clinic.” I’m a mom who’d never given more than Tylenol to my child. And I thought, we’re going to go to the Mayo Clinic and I was told there was one doctor that knew anything about NMO and his name was Dr. Brian Weinshenker at the Mayo Clinic. I’m like, “Oh my gosh. Not only is there something so rare here, but there’s only one person on the planet who knows anything about it?” So I’m thinking now not only do I have to surround my daughter with this white protective light, I must protect Dr. Brian Weinshenker because he is the only man that knows anything about NMO.

Victoria Jackson:

It was for my daughter. I mean, I’m not somebody who was going to accept what they were potentially telling me was going to happen. So I knew that it takes somebody with a vision to do it and I was going to be that person. I was going to shift all gears, close the book on mascara, and open the book on medicine and find a cure.

Victoria Jackson:

It’s really nice that all of you are here. I look very much forward to the next couple of days of science.

Victoria Jackson:

A lot of what happens in research is people work in all their independent little silos and they never really talk. But I know that if you’re actually going to really cure something and make a difference, you have to work through collaboration, and a symposium seemed a perfect vehicle to do that.

Victoria Jackson:

You need to share your great information with this one over here so that we can do this. We have to do it together collectively.

Claudia L.:

To see Victoria take her resources, to take her drive to protect her child and also open it up to the world is, as a fellow mother, inspiring.

Claudia L.:

I see reversibility in the disease. That means something’s happening very early that can reverse. It doesn’t need to go all the way to compliment damaged tissue death.

Victoria Jackson:

People are talking to each other because what I did is I brought literally all the world experts in NMO that know anything about this disease and have brought them all together.

Victoria Jackson:

And do you think because NMO is such an outlier that it’s just its own model?

Narrator:

There are common downstream effectors. I think upstream though, the kind of the what’s the real cause of the disease, I think, is going to be unique.

Benjamin Greenberg:

I disagree. I actually think that the predominant flavor is of an antibody mediated pathogenesis.

Benjamin Greenberg:

Victoria has been a mom on a mission and I think she’s very open about the fact that she will regularly flip back and forth between being [inaudible 00:04:21] mom and being the head of a foundation, and it’s struck a chord with all of us. It’s been different to have an advocate in the research arena who’s been touched by it personally. It puts a new spin on things.

Victoria Jackson:

One of my medical advisor said, “Victoria, you’re going to have to remember this is a marathon, not a sprint.” And I don’t really think in terms of marathon’s, although I know it will be a long enduring process of sorts, but I’m still sprinting through it.

Victoria Jackson:

People know me as the infomercial queen, the pioneer of selling beauty cosmetics on television. And I’ve had great success and I think everything that I’ve learned as a business woman was preparing me for this. I’ve always been a warrior. I mean, I didn’t grow up having money. And I didn’t graduate high school and go to college, and now all of a sudden I have had to turn my brain inside out.

Narrator:

Doing plasma exchange, and you could use a column of where you have antibody on it and you take out the blood. You run it over the column. The antibodies against the [inaudible] stick to the column and you give the blood back. So, that’s a possibility.

Victoria Jackson:

You could check, could you monitor the levels-

Benjamin Greenberg:

Of course.

Victoria Jackson:

… that you had in your body like when that started coming back and-

Brian Weinshenker:

Bill and Victoria Jackson have moved very quickly. Right now they are the major source of funding for our programs, and certainly we’d be going at a snail’s pace compared to what we are now without their support.

Victoria Jackson:

We’re really making some great strides, and it’s going to be extraordinary because I am not looking at this as a marathon, but definitely a sprint of where we’ll be even in the next three to five years. It will be light years.

 

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