Diagnosed with Multiple Sclerosis in 2000, Art Mellor ’85 now heads the nonprofit organization he founded to help scientists find a cure
MIT Technology Review
The symptoms came and went for almost two years, but by the summer of 2000, Art Mellor ’85 couldn’t ignore the numbness in his hands and other odd sensations any longer. He consulted his doctor and was soon diagnosed with Multiple Sclerosis (MS), a neurological disease with no known cause or cure. “It was like a stool was kicked out from under me,” he recalls. At 37, he was in the prime of life, had founded three high-tech companies, had a great girlfriend, and drove a spiffy, royal-blue Porsche Boxster. Within six months, however, the diagnosis spurred him to leave the high-tech world and launch a new startup: a nonprofit aimed at accelerating the search for a cure for multiple sclerosis.
Mellor’s decision to shift gears was based largely on his assessment of the state of MS research. Like any newly diagnosed MS patient, he wanted to learn everything he could about the disease, which afflicts some 350,000 Americans and 2.5 million people worldwide. He searched the Internet and read medical textbooks. He talked to doctors, researchers, and MS organizations. It didn’t take him long to realize something was wrong. “I asked, ‘Where’s the plan of attack?’” Mellor says. “I would assume there would be a sense of ‘Here’s what we know, here’s what we don’t know.’ As an engineer, that’s what you’d expect.”
Mellor found no such plan, which compounded his struggle to come to terms with the disease. The most difficult aspect of it to accept, he says, is its unpredictability. “I call it the terrorist disease,” he says wryly. It is believed that because MS causes the immune system to randomly attack myelin, the insulating material surrounding nerve fibers in the central nervous system, its symptoms can come and go inexplicably and can vary from person to person. Typical symptoms include loss of balance, blurred vision, difficulty with concentration and memory, slurred speech, numbness, and paralysis. Although MS is not considered fatal, many patients become increasingly disabled, requiring walking aids or wheelchairs.
Worst of all, there’s no way to determine a prognosis. “That’s one of the hallmarks of MS,” says Mellor. “The prognosis is completely unpredictable, other than you’re going to [deteriorate].”
Faced with such a grim picture, Mellor decided he wanted to do something about it. At first he considered going back to school, becoming a biologist, and doing research, but he realized there were a lot of smart people already doing that. “After looking at it, the problem really seemed to be organizational. Medical research is a cottage industry that has lots of smart people working in tiny groups, not interacting with each other a whole lot,” Mellor says. “It just occurred to me that there needed to be a plan, and there needed to be somebody pushing that plan’s agenda and organizing the tribes into a bigger army. That’s basically what I’ve been doing for my whole career—pulling people together, raising money, being a giant systems integrator, in a sense. And those are skills I didn’t need to go back to school for, so I thought, ‘Let’s leverage that.’”
In January 2001 he teamed up with his neurologist, Tim Vartanian, director of the Center for Treatment of Multiple Sclerosis at Boston’s Beth Israel Deaconess Medical Center, to found Boston Cure Project for Multiple Sclerosis. Mellor set up shop in an old gas station, which a friend was renting to store his race cars and run a consulting business. By July, Boston Cure Project had been granted nonprofit tax status and could begin fund-raising. A $50,000 contribution that summer from the Watercove Charitable Foundation got the company rolling.
Setting up the organization was fairly easy. Mellor has a long history of launching startups, from running magic shows and lemonade stands as a kid in Milwaukee to starting three high-tech ventures: Think Consulting, Midnight Networks (later bought by Teradyne), and Gold Wire Technology. Even learning a new vocabulary and getting to know the medical community was manageable. The biggest obstacles, Mellor found, were the slower pace of the nonprofit world and trying to operate in challenging economic times. Nonetheless, Boston Cure Project has managed to grow to four full-time employees, attract 450 volunteers, assemble advisory boards, raise more than $625,000 for operating expenses in 2003, and move to a new workspace.
The nonprofit’s biggest accomplishments, though, are rooted in its unique approach. There are a handful of national and international MS organizations, and dozens of regional ones, which generally share Boston Cure Project’s mission: to find a cure for MS, educate and support those affected by the disease, and bring together researchers, pharmaceutical and biotech companies, and doctors. But Boston Cure Project is the only organization creating the plan of attack Mellor was searching for when he was diagnosed.
Called a “cure map,” the plan is an effort to systematically document in detail what has been done in MS research to date and identify where the gaps are. It’s broken down into five categories that correspond to the suspected causes of the disease: genetics, pathogens, nutrition, toxins, and trauma. Hollie Schmidt ’87, SM ’92, SM ’92, vice president of scientific operations, is doing the bulk of the work, with guidance from Vartanian and a scientific advisory board. As documents for each category are completed, they are posted on the Web (www.bostoncure.org) so they can be used by MS researchers.
“I think it’s a wonderfully logical approach to helping find a cure,” says Vincent Macaluso, director of the Multiple Sclerosis Center at Flushing Hospital Medical Center in Flushing, NY. “Art and Tim realized that all the parts are there, but nobody’s put the car together.”
Boston Cure Project has also partnered with Genomics Collaborative in Cambridge to create a large-scale blood, tissue, and data bank for use by scientists. A sizeable bank would allow many researchers from different disciplines to study the same specimens—a critical component of finding a cure, Mellor says, since MS appears to have more than one cause. Moreover, MS may be a family of diseases, so without a large study population, it’s difficult to detect meaningful patterns.
No one has established a sizeable bank yet because it’s expensive, it won’t yield publishable research results, and it’s a huge administrative task, says Mellor. “Somebody had to stick their neck out and make it happen.” The first pilot of 100 samples is about to begin at Vartanian’s clinic at Beth Israel, and Mellor expects the bank to ultimately contain 10,000 or more samples.
“None of this is vision,” Mellor claims, adding that this is just how engineers address problems. “I like to point out that the method we’re using, should we have some success, can be readily adopted [by organizations tackling] other diseases,” he notes. In fact, a few other organizations in the medical field are using similar systematic, collaborative approaches, such as the Prostate Cancer Foundation and the ALS (Lou Gehrig’s disease) Therapy Development Foundation (founded, incidentally, by another MIT alumnus, James Heywood ’91).
Since his diagnosis, Mellor continues to have periodic flare-ups. For a few months last summer he was numb from the chest down and had difficulty walking. Now he has a patch of skin on his back that feels as though it’s burning, numbness in his hands, and a bit of trouble with his memory. In addition to living with the disease day to day, he’s found it tricky to plan for the future. He did marry his girlfriend, Debbie, and they plan to buy a house and have kids. Mellor wonders, Should they buy a ranch so he won’t have stairs to contend with later on? How will the disease affect his role as a father?
Still, he’s made a decision to move forward with his life. He admits
that if he hadn’t been diagnosed with MS, he’d rather be writing code for
16 hours a day. But all that’s changed now. “When you sit and fantasize
about what impact you might make if you’re successful, it’s way bigger
doing what I’m doing now than when I was writing software. And that’s what
keeps me going.”
Copyright © 2004, MIT Technology Review