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The Guthy-Jackson Charitable Foundation 2009 NMO Patient Day

Victoria Jackson:

Well, it is so, so nice. You have no idea how glad I am to see all of you here today.

Victoria Jackson:

The patient day, I mean, I’ve never done this before. It’s really about getting everybody together and building a community.

Victoria Jackson:

My daughter said to me, has to be a patient day. It can’t just be the doctors and the scientists. It’s not just about you and me anymore. It’s about everybody who has NMO.

Jesus Loreto:

One great thing about coming here is that we’re going to meet other patients that suffer from the same illness, from the same disease, and nobody has to ask questions or how do you feel? I mean, everybody knows, so that’s very, very important.

Victoria Jackson:

I know when I first received the diagnosis with my daughter, it was what I would call a bad day. It was a bad day and I just immediately hated those three letters, NMO. Today, even though that day was a bad day, today is a good day because today is a day where we all get to be together. We really have to sort of join hands around all this and support each other and lift each other up.

Reny Tan:

I think it’s a great way to meet and share with other patients your experiences.

Narrator:

My sister’s on rituximab. If she should have an attack, she’s wondering if that would necessitate her going off of it?

Brian Weinshenker:

One of the big questions is how often do you give rituximab or when do you repeat it? The B cell counts can be zero, and then 20 days later the patient calls you with an attack and you recheck the B cells and they’re 10%. What I advise is just doing it routinely every six months because that seems to be a very critical period where attacks can break through.

Lisa McDaniel:

For me to be here first is just unbelievable to me that I’m here and that I’m actually meeting a lot of people that have supported us over the last year and a half, two years.

Lisa McDaniel:

I have a seven year old son who was diagnosed in May of 2008. He has been through steroid CellCept, IVIG, rituximab, plasmapheresis. He’s now getting [inaudible 00:02:23] and in between that he’s getting IVIG and steroids.

Lisa McDaniel:

I’m anxious to hear what the doctors have to say. I’m anxious to talk to some of them and hopefully get some idea of some treatment options that maybe we haven’t looked at.

Benjamin G.:

Cause even though you list a long litany, I was listening to at least four different interventions. Believe it or not, there are still very good options on the table that we’ve had success with.

Jesus Loreto:

It’s wonderful in the past year how much information has been gathered, how much information you can find on a website for the foundation.

Reny Tan:

Since this is such an infant decease, I think it’s really up to us to educate ourselves.

Claudia L.:

We heard some really provocative and interesting data from Dr. Berkman and from Dr. Steinman, both really fast tracking drug discovery in their laboratories, and then the clinicians in the room talking about how to fast track a clinical trial so that once that drug comes, we’re good to go and off and running.

Victoria Jackson:

It’s really important that all of the sites that I’m funding have access to all the tissue and the blood samples from patients so that they can carry on with the research they need to do.

Benjamin G.:

We get asked all the time by patients, what can I do to make a difference? For everybody who’s got a bandaid on their arm, you have done the yeoman’s work today in terms of making a difference.

Candace Coffee:

One of the things I’m happiest about with the Guthy Jackson Foundation starting up is that there’s going to be this sort of baseline and case history that all in one place that hasn’t really been around before.

Lea Long:

We all have all these little bits of information, but we individually don’t know what’s important and what’s not.

Victoria Jackson:

We have to build a registry. There’s no real registry. It’s sort of loosey goosey. I know people have done amazing jobs organically of connecting people, but my task is to really take and create a registry of people and put in so people will know what your different therapies are and really start organizing this.

Jesus Loreto:

To get all these doctors together, it’s incredible. I mean, you feel so much hope. There is light right there at the end. There are better days ahead, as we always say.

Maria Elena Loreto:

It’s wonderful.

Benjamin G.:

Sometimes if we can just get him into a remission for a year, some of the other maintenance therapies would then be [inaudible 00:04:45].

Victoria Jackson:

I am so inspired by everybody’s story and the heart of all of these researchers and scientists, and I am not going to stop until there is a happy ending for everybody.

 

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