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Hope with Kathy Najimy Part 3

Kathy Najimy:

You’re giving some hope to this condition. 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 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:

They don’t know about it. 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.” All of a sudden you feel like, “Oh my gosh, not only am I trying to do this for Allie, I have all these people.” That’s what this has been like, this journey of NMO. It’s 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. 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 will 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 of some much bigger conditions that affect a lot of people. I’m not going to stop and it’s my new mission in life and 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-

Kathy Najimy:

I was going to say that there’s the light.

Victoria Jackson:

… 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. 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 that you had.

Victoria Jackson:

That’s whatever you have to do, wherever you have to dig deep. I say even with my husband, it was really hard for him. I think he didn’t quite know where to go and sort of 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.” 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’ve never even thought I would ever have to learn or understand. Understanding what NMO does and the symptoms that it… what is it doing, how do you counteract that? 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’m 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.

Kathy Najimy:

It’s not a sexy disease.

Victoria Jackson:

It’s not about fundraising. 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 a light at the end of the tunnel. I guess it’s always that you feel that race against time 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. 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, there’s a lot to be learned and a great support for patients.

Kathy Najimy:

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, Allie, but it’s happening to kids and grownups all over. 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 it. Thank you, my love.

 

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