Art Mellor always put blood, sweat, and tears into the high-technology start-ups he worked with, but when he was diagnosed with multiple sclerosis, following the old maxim became literal.
Soon after his diagnosis in 2000, Mellor founded the Accelerated Cure Project, a Waltham-based nonprofit organization that is fighting multiple sclerosis with collaborative research, and with what Mellor hopes will be the world's largest tissue bank of samples taken from people with MS and related diseases.
Sample number one: Mellor's own blood.
The approach taken by the Accelerated Cure Project, with a $2.3 million annual budget, differs from that of most other MS efforts. Instead of collecting money, the project focuses on collecting the tissue samples, which can be used in multiple experiments, and organizing the results in a centralized facility. Outside researchers can use the project's samples to investigate possible causes of MS, which is thought to be an autoimmune disease that affects the central nervous system. In return, the project asks that the resulting data be made available to other researchers. This gives researchers access to a much larger collection of samples than they could afford to procure otherwise. And because a vast array of research can be conducted on the same set of samples, researchers are better able to find any correlation among them.
So far, the project has enrolled 700 subjects and has a goal of 1,000 participants by early next year, through its six collection sites and about 50 paid employees across the country. Each sample can be used in between 10 and 20 studies, sometimes more. Donors are asked to make themselves available for future donations as well, so scientists can see how their tissue changes as the disease progresses. Although right now the project collects only blood, the group hopes to eventually gather cerebrospinal fluid and postmortem brain tissue.
Mellor, who was 37 when he was diagnosed, felt that research would be more effective if it had a specific goal - in this case, finding what causes MS.
"We're still funding a research establishment that acts like a single researcher is going to 'find' a cure under the microscope in the lab," Mellor said. "There's no strong feedback loops. You don't have anybody waiting for the results. Everybody does their little piece and expects the fully formed thing to come together."
But in real life, solutions aren't that simple to find, he said. "The way things were, we weren't looking at a cure anytime soon," said Mellor, who turns 45 next month.
Multiple sclerosis is a disease of unknowns: unknown causes, unknown cures, unknown prognosis, and easily misdiagnosed symptoms. Researchers theorize that multiple sclerosis has several causes - for example, a person might have a genetic predisposition to MS that is triggered by a virus, bacteria, toxic agent, naturally occurring chemicals in the body, environmental factors, or some combination of the above. The uncertainties make it even more important to be able to perform a number of studies on the same set of samples, Mellor said.
One of the studies using samples from the Accelerated Cure Project hopes to establish a blood test for MS that could make diagnosis much easier.
An MS diagnosis is usually made after excluding other conditions, such as Lyme disease, stroke, or a brain tumor, that have similar symptoms of fatigue and loss of balance or muscle coordination. It can take a year or more to make a definite diagnosis, but with a blood test, people could have the results within weeks.
Marion Leeds Carroll, 56, wanted to offer samples as soon as she heard about the project. She finally donated in July at the University of Massachusetts Memorial Hospital in Worcester. Her brother, who does not have MS, donated a blood sample to be used as a control at a New York collection site.
"I focus on the Cure Project because I feel like it is efficient - it's like middle management for MS research, it's something that can organize things," said Leeds Carroll, who lives in Arlington. "I think Art and his team know how to play well together with the other research groups. And I think the other research groups are beginning to see that they really do need to work together."
For Leeds Carroll, donating her blood was a way to fight a disease that had taken things from her. Early symptoms of MS were part of the reason she gave up on her hopes for a career as an opera singer. She said she also sees giving her blood - and she also wants to donate her spinal fluid and brain after death - as a way to help others.
"I'm not allowed to be an organ donor anymore because I've got MS. I can't donate blood because I've got MS. There have been donation drives for bone marrow, and I can't donate that because I have MS," said Leeds Carroll. "Anything I can donate, I will give."
David Blohm, who lives in Sudbury, is contributing as a tissue donor and as a member of the board of directors. Blohm, a high-tech entrepreneur, was diagnosed the same year as Mellor.
"Art, being diagnosed with MS, didn't know anything about MS. As an MIT grad, he applied his general smarts and analytical abilities to what the problem was and how to go about solving it. It's really impressed me, the way he's done it," said Blohm. "When you sit in a room with Art and the doctors, you can't tell the difference. He knows as much or more than they do."
Mellor said that working at the project is much like working for a start-up. Sixty-hour work weeks are common, he spends a lot of time traveling and meeting with donors, and even nonbusiness hours are filled with networking or meeting with volunteers. Every week can be different, he said, meeting with billionaires one week and poor people the next; people with comparatively mild MS symptoms at one time and later, others whose disease has progressed to the point where they are bedridden. Keeping so busy, despite episodes of fatigue, weakness in his legs, and occasional memory loss, has been a blessing.
"It helps me forget my own MS. I meet all these other people, and I forget that I'm one of those people," said Mellor. "It's the healthiest form of denial."
For more information about the Accelerated Cure Project and how to donate blood or tissue, visit its website, acceleratedcure.org.
Stephanie V. Siek can be reached via e-mail at firstname.lastname@example.org.