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The Jane Gilbert Interview (Page 2 of 2)

An Interview with Jane Gilbert

President and CEO ALS Association

Gary Barg:  If you look forward five years or so, what would you see the Association doing that maybe it’s not doing now? Or what path do you want to take it on?

Jane Gilbert: Well, yes, that’s an interesting question because I often hear people say, well, we’re going to find a cure because at the end, we’ll all celebrate and close up shop and wouldn’t that be wonderful? I do not think that would be the case. As we find treatments, ALS will become more of a chronic disease and you will, therefore, have more people living with the disease. Right now, we’ve only got thirty thousand people, we estimate, living with ALS in the United States at any given time. But if they lived longer, then there’d be as many people living with ALS as there are with MS.

So, in the next five years, I think there’ll be an even greater need for the Association because certainly we will want to be helping those people who are living in a chronic state with the disease, as well as their families and caregivers. I think you’ll see a greater need, an increased need, for the Association and the work that we do both in terms of the continued research, but just as importantly, the caregiving component of it.

Gary Barg: What can anybody reading or listening to this interview do to help the Association?

Jane Gilbert: Well, like anything, the greatest need is funding. I often say it’s like any disease. If everybody paid 10 dollars, we would have a wonderful opportunity to really impact the outcome of this disease. Because it is a relatively unknown disease and relatively rare, the funding for it oftentimes is difficult. It’s not like some of the major diseases where everybody knows someone living with the disease. Not everyone knows about ALS. And so, mostly funding; but just important is the awareness. In interviews like this, it’s so important to our organization because it does allow us to tell our story and to help people understand just how devastating a diagnosis of ALS can be; not only to the person who is diagnosed with the disease but, as I said, their family. It affects everybody.

Gary Barg:  What would be the one most important piece of advice you would like to share with family caregivers?

Jane Gilbert:  I would, first of all, say thank you. Because I think it can be a really thankless job of caring for somebody 24 hours a day, seven days a week. And the other thing that I would say to them is that they’re not alone in this – that there are others, that they’re in shock, that please, please take care of themselves. And so I would encourage them immediately to contact their nearest chapter or nearest clinic and center. And this is particularly true with somebody who’s been newly diagnosed. It’s human nature to think that you can do it on your own. And ALS is a disease that you simply cannot do on your own. You have to have a couple of people who can help you.

 

 

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