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Tuesday, May 15, 2007

He’s engineering his own cure: A Multiple Sclerosis Patient Advocate

He learned engineering at MIT, and then launched three high-tech start-ups. That was before he was diagnosed with Multiple Sclerosis. This is Art Mellor’s story:

Like for most people, it was good news when I got diagnosed with MS, because the other thing it could’ve been was a brain tumor.

Being an engineer, I thought, I have this problem; how do I stop it? I got a bunch of books at the library, which said, basically, You’re gonna be a cripple, here’s how to deal with it. Then I went on the Internet, and it seemed to be the same paragraphs from the National MS Society pasted onto every web page. I complained to my neurologist; he gave me textbooks and articles, and I read them. I started to get scared, because none of them had analysis or synthesis of findings; instead, it was all description. So much of medical research is description! - not about coming to a conclusion. When I realized that we’ve really not learned any answers to key, critical questions in MS, I didn’t believe that I was reading it correctly. I met with my neurologist and MS researchers, and they all confirmed, No, you’re reading that right. So at first I thought I’d get a Biology degree and work on the tough questions. Then I realized the problem wasn’t that more smart people were needed in the lab; there are a lot of smart people in the field; it was a management problem—it’s about orchestrating the components of the system properly. I realized that that’s what my background is about—getting a bunch of people together, deciding on the right things to do, and raising money to make it happen. So I quit my job, and I met with my neurologist a bunch of times about what to work on. Our conclusion was that the CAUSE of the disease was the most important underserved area.

Since start-ups have been my whole career, the thought of starting one wasn’t a detriment to me; that was the easy part. It was hard to do it the first time, but this would be my fourth.

So I set up the Accelerated Cure Project for Multiple Sclerosis. We’re a nonprofit, based in Waltham, Massachusetts.

I’m proudest at getting a six-center IRB [hospital Institutional Review Board] approved study running. Researchers are collecting samples of blood and data from people with MS for the repository. Now I’m starting to talk with researchers about the studies that will be done on it.

Basically, the repository we’re building is a platform. Researchers now think that for someone to get MS involves a genetic susceptibility and an environmental trigger. So we have to be able to study all of them, on the same people. That’s hard to do because MS is so rare, so it’s expensive to collect data, and because scientists are so specialized. By having a repository, we can get a geneticist to do genetic screens on some samples, and get a virologist to study their viruses, and a toxicologist to study environmental exposure in the same people, and then we can join their findings. We can look at the genes that are associated with those people’s viruses, and relate this to those same people’s environmental exposure.

It’s like we’re laying railroad tracks. Scientists are like a train that can go 300 mph, but there are no tracks for them to run on at that speed. They can’t really build the tracks themselves —it’s expensive, administratively difficult, and not publishable. The government can’t make MS a big priority because MS is not prevalent, not fatal, and not contagious, so it’s pushed to the bottom of the barrel, otherwise.

Art is an engineer, not a poet, so when I applauded his vision, he corrected me: "The vision is only in the doing of it."

Advice to MS patients: Forward this to your friends. Read more at his web site, and consider giving blood samples to the Accelerated Cure Project for Multiple Sclerosis.

Read a story about an MS simulator.

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