ART MELLOR (Photo by Frank Siteman, 2003)
People With MS and the Courage to Give
Chapter 4: Creating a Cure Map
I HAVE TO ADMIT THAT I WAS NOT always a very giving person, but having MS and watching others give has changed all that.
“We’ll check your blood, but don’t get your hopes up. I really think this is MS. You should go on a treatment. Do you have any questions?”
That was the verbatim delivery of my diagnosis of multiple sclerosis. Suddenly my perfect life came to a screeching halt. I was thirty-seven years old.
At the time of my diagnosis I was the chief technical officer of a high-tech company I had cofounded with a friend from MIT. I had recently sold another company that I had cofounded. It was the peak of the Internet boom, we had just finished raising $27 million in venture capital financing, we were growing like crazy, and our product was really coming together.
On the home side, I had just moved in with Debbie, the woman of my dreams, and planned to ask her to marry me later that year. I was at the top of my career, my personal life couldn’t have been better, and everything was going fantastically. It looked like financial independence, personal fulfillment, and realization of my career dreams were finally within my grasp.
Sitting in the doctor’s office that 14th of June 2000, all I could do was picture myself in a wheelchair (the classic “oh my God” reaction to an MS diagnosis), my girlfriend leaving me, and me unable to work, walk, or feed myself.
It was natural for me to leap to worst-case scenarios. Running a business, I did that every day. When presented with any problem it somehow helped to know what the worst-case situation might be so I could decide if it was worth spending energy on it and if so, where.
This scenario was different though. I didn’t know what I could do. I didn’t have the information I needed. I didn’t even really know what multiple sclerosis was. Being an engineering nerd, I immediately jumped onto the Internet and searched for pages on MS. There were so many, but after a while it became clear that most were filled with the same stock descriptions of the disease or just provided links to other pages. There were a few gems in there, but they were few and far between.
Next, I went and bought all the books on MS that I could find at my local bookstore. These had some helpful descriptions of what the disease is and how it might or might not progress, but they tended to focus more on the “so you’re going to be a cripple” angle rather than the “let’s fix it” front.
When I complained to my new neurologist, Dr. Tim Vartanian (I had changed providers after the first did such a miserable job of presenting my diagnosis), about the lack of detailed information on the state of MS research, he gave me a number of textbooks he had used and suggested some others. I read them as quickly as I could and came to a shocking conclusion: nobody was really working on a cure for this disease in an organized and systematic fashion.
I couldn’t believe this, so I set up meetings with some local MS researchers (I was lucky to be living in Boston where there are quite a few), which simply confirmed my findings.
It took me about six months to accept the fact that this wasn’t just a bad dream. At that point I realized that if I wanted solutions to this problem, I would have to dedicate my life to it. I wasn’t sure how, but I knew I had to find a way.
At first I thought I would quit my job and go back to school to become a
researcher. Science was my first love, after all. But it occurred to me that there were many smart people already doing that and here we were with no known cause, no known cure, and a very poor understanding of what the disease even is. What was missing was the plan of attack and the centralized coordination to pull it off. My entrepreneurial background had given me extensive experience in the areas of planning and execution of plans to make things happen. Raising money, forming business alliances, creating products and processes where there were none before were all things I was good at. I figured this was where I should apply my efforts.
So I did. I quit my job and took off a few months to “decompress,” then slowly began to formulate my plan of action. In the meantime Debbie and I got engaged. I wasn’t sure she fully understood what she had signed up for, but I sure tried to make her understand. She said she did, and that’s what mattered to me.
I started talking about my idea with Tim at my follow-up neurology appointments, and he agreed that something needed to be done to shake up the system. We began meeting regularly and our meetings resulted in the formation of the Boston Cure Project for multiple sclerosis (www.bostoncure.org), a nonprofit organization. Our belief is that the fastest route to a cure will come from knowing the causes of MS. To know the causes we need to have a plan of attack—what do we know already, what do we need to know, how do we go about finding it out?
We decided to create and execute that plan, a plan we call the Cure Map.
Over the course of 2001 we began setting up the infrastructure for the organization: incorporation, office space, Website, lawyer, accountant, bank account, 501(c) 3 tax-exempt status, etc. We quite literally started in a garage. A friend had been leasing an old service station to store his racecars and operate his consulting business, and he sublet on office to us at extremely low rates.
In August Debbie and I got married, and when we returned from our honeymoon I started working full-time for the organization. By the end of the year we’d hired another full-time person, Andii Briggs, as operations manager; created a Board of Directors, Board of Advisors, Scientific Advisory Board, and Pharmaceutical Advisory Board; and had a host of volunteers helping us out. In November we had our kick-off party, featuring David Lander (Squiggy from Laverne & Shirley) and Liane Mark (Miss Waikiki)—our first two MS celebrity endorsers.
In the year since then we’ve grown to four full-time staff, two part-time on-site volunteers, two part-time off-site volunteers, three consultants, 150+ on-call volunteers, and seventeen advisors of various sorts. But the most important accomplishment has been the creation of a plan that we believe will lead us to determining the causes of MS, assuming that they can be determined at all.
It has been about two and a half years since my diagnosis and my life has changed completely. I spend my days doing many of the same things I did before, but the people I interact with and the information I need to process and make decisions on are completely different. It has been extremely difficult to start my career over from scratch, building up new networks and support structures, creating another organization from the ground up in a completely different field, getting work done with volunteers rather than paid employees, and learning to raise money for a promise rather than a product. I have needed to give myself a super-quick education in biology, medicine, the health-care industry, clinical trials, and the nonprofit world. Luckily there are some good books and advisors to help.
But it has been very fulfilling in unexpected ways. Before, I mainly met people in high-tech, but MS touches the lives of people without regard to what they do, so now I’m in contact with a much wider variety of people from all walks of life. I have met doctors and accountants and mechanics and police officers
and stay-at-home moms. And I have been touched by the philanthropy of those around me who have helped us build our organization. Generous contributions of money, time, and services have poured in from so many people.
And while I am ultimately doing this for purely selfish reasons—I want a cure for me—I find that it brings an unexpected satisfaction to me to think that what I am spending my time on may turn out to benefit so many others in a lasting and significant way. It makes those really bad days worth plowing through, knowing that our progress can make such a difference.
The Website for Art Mellor’s Boston Cure organization is: www.bostoncure.org
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