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CoachArt “Evening of Champions”

Ali:

Don’t cry for me, Argentina. The truth is I never left you all through my wild days. My mad existence I kept my promise. Don’t keep your distance.

Male Voice:

All right.

Victoria Jackson:

Yay.

Victoria Jackson:

I have two boys and a girl and my daughter, Ali, and she says, “Mom, I kind of have this eyeball headache and actually things are starting to get blurry.” So I go to the doctor, the doctor says, “Your daughter has NMO, which is neuromyelitis optica.” It attacks the optic nerve, which results in blindness and the spinal cord, which results in paralysis. And it’s really bonded the two of us together, and we’re sort of 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?” I think she’s kind of owning that now and if she can inspire others, not have people feel sorry for her, but say, look, life goes on and you figure it out and you just keep doing what you want to do. She’s my inspiration.

Victoria Jackson:

Okay, now I’m going to have to be a scientist. I’m a researcher, I’m a mom on a mission and I’m going to have to learn this. I’m going to have to learn everything about NMO and I’m going to have to really hang in there and learn this science. 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. Let’s show the world what we can do if we all work together, how we can change the face of this and how it might really impact not only the community of people that have it but show everybody how it should be done.

Victoria Jackson:

I’m striving for hope and when you’re in something where everything’s been turned upside down, I’m just going on adrenaline and love. If there’s hope, it’s just going to come from the love I have and the work and I’ll just keep doing based on love.

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, the truth is that there is hope.

 

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