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Spring Survey 2012 Results

Getting Connected in the HD Community

Program: Going Public to Help Others with Huntington’s Disease
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Andrew Schorr:

Or why not me, right. Lots of questions. So now you’re involved a company that has one product, and you’re here at the neurology meeting where there’s discussion. Dr. Kumar was saying he’s encouraged. He feels there’s a tempo picking up in Huntington’s. Do you have a sense of that?

Katie

I think there’s a lot of hope. There seems to be a lot more going on now. You know getting a drug approved by the FDA after 30 years of trying to work on that it finally puts Huntington’s disease on the radar, and it gives a lot of people hope and the motivation to move forward and see what could we do next.

Andrew Schorr:

You know, I’m a fan of “House, M.D.” I don’t know if you watch it, but Dr. Thirteen, one of the characters on it, has Huntington’s, and one of the earlier episodes they had her in a clinical trial. What’s your thought? Have you thought of being in a clinical trial or having your ear to the ground related to research to see could this help improve your own situation?

Katie

I’m active in clinical trials as long as I can qualify for them. I’m always looking out for what’s coming down the pipeline that I might be able to get involved in because it doesn’t just affect me. It affects my family, it affects my friends, it affects my whole HD community.

Andrew Schorr:

I was going to talk about the HD community. People need to know now that they’re not alone, not only that they’re not alone probably in their family if the secret comes out and is discussed honestly, but also that there are other families throughout the world really trying to deal with it and that you can work together with the research community, the clinical community, and the Centers of Excellence to try to move things forward.

Katie

There’s a great sense of community once you’re connected into the Huntington’s disease. There’s the Huntington’s Disease Society of America every year has an annual convention, and it’s less like a convention and more like a family reunion. We get together once a year and we see people, we find out what’s going on in different areas of the country, and even what’s going on in different areas of the world because all of these researchers are all working together.

Andrew Schorr:

Fortunately they’re working together, and that’s a good thing. So how do you approach every day? You had the test, you know it’s within you as far as the repeats, and you don’t know when or if even another shoe will drop or how it will affect you. How do you approach every day?

Katie

I just, I wake up, I figure out what I have to do, I mean, there are days where I mean everything will just pile on, you know like the straw that broke the camel’s back, and I’ll just break down and feel like why am I doing this; what really do I do next? But then I think of my friends that are also affected. I have friends that have juvenile onset who are already far progressed into the disease and are teenagers. You know I think of them, and that’s who I do it for.

Andrew Schorr:

That propels you.

Katie

Yes.

Andrew Schorr:

And family members of course you know and you’ve been in that situation. We should also mention that prior to working with a pharmaceutical company you were an occupational therapist working with people who were in a center being treated for Huntington’s right? So you’ve seen it a lot first hand.

Katie

Yes.

Andrew Schorr:

And you know you want to make a difference. Well, you’re certainly to be congratulated Katie Moser really in what you do. It’s taken a lot of courage to talk about it, but every day you’re fueled with this mission, and I want to thank you. As a patient advocate really my experience is in cancer, but I can imagine families touched by it and you personally that I know you can make a difference. You’re a young woman, so I wish you a lot of success in what you do. Thank you for being with us on Patient Power.

Katie

Thank you for having me.

Andrew Schorr:

All the best Katie Moser. Andrew Schorr reporting from the American Academy of Neurology talking about Huntington’s and really hope for a brighter future. As always, knowledge can be the best medicine of all. Thanks for joining us.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you’re your own doctor, that’s how you’ll get care that’s most appropriate for you.

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