Volunteers offer blood and histories for MS research
By Elizabeth Cooney TELEGRAM & GAZETTE STAFF
ecooney@telegram.com
Gena K. White plays with her son, Will, 2, as she has blood drawn for a database being created for the Accelerated Cure Project at the Multiple Sclerosis Center at UMass Memorial in Worcester. Tuesday afternoon. The White family drove up from Blythewood, S.C., to become part of the project.
It’s about time.
Research takes time when the goal is figuring out the cause — or more likely, causes — of a baffling disease such as multiple sclerosis. But for the people who have the degenerative neurological disease, time is what they don’t have.
MIT engineer and computer networking entrepreneur Art Mellor, diagnosed with MS seven years ago at age 37, saw the need to speed up the pace of research in two ways. He recognized that scientists spread out across the country and the world didn’t have enough information or tissue samples to tell them about how MS and related diseases might unfold. And he saw how isolated these investigators were from one another, reflecting how science is done in academic and industry labs that need to win grants or develop drugs.
The Accelerated Cure Project for Multiple Sclerosis wants to find the causes of MS by creating a repository of detailed information and blood, spinal fluid and other samples from people with the disease and from family members without the disease. Six sites across the country, including UMass Memorial Medical Center in Worcester, are seeking a total of 1,000 volunteers in its first phase to share their histories and lab work that researchers can study. In turn, those researchers must agree to share what they learn. Mr. Mellor and his partners believe this kind of collaboration will yield progress far more quickly than individual efforts under way in many MS centers.
“We can effectively multiply the value of research results through sharing,” he said.
No one knows the cause of MS. There is a strong suggestion from studies that heredity and environment play interwoven roles, but more work needs to be done to tease out those influences. The dearth of large-scale trials was a shock to Mr. Mellor when he and some colleagues set out to create what they call the Cure Map, which is an analysis of all the literature into the causes of MS.
“We thought at first we would locate the holes in the cloth of research and figure out what needed to be patched,” he said. “We determined that the cloth of research was all holes.”
So Mr. Mellor quit his job, started the project and began working with Beth Israel Deaconess Medical Center in Boston and UMass Memorial in Worcester to figure out how to create a network of sites to gather biological specimens and patient histories. It will cost the Accelerated Cure Project $2 million to $2.5 million to complete those 1,000 collections.
Three were added last week when the White family drove up from their home in Blythewood, S.C., to become part of the project.
They had been searching for trials for their 2-year-old son, Will, who was diagnosed with transverse myelitis when he was 5 months old. Transverse myelitis is inflammation of the spinal cord that can occur in MS.
The Whites heard about the Accelerated Cure Project in a TM newsletter. They’d been disappointed that their son was too young to become part of experiments to see what might restore the movement that he has lost from his waist down.
The Accelerated Cure Project isn’t a clinical trial in the sense that therapies are tested. Instead it offers the foundation for questions that may one day lead to answers, Mr. Mellor explained.
The Whites were eager to be involved.
“We were thrilled when we talked with Janice,” Mrs. White said.
Janice Weaver is the UMass Memorial coordinator for the project. She has completed information and samples from 125 people since September. Will was the first child to be included. She explained to Mrs. White that the nine vials of blood taken from each family member — the equivalent of 4 tablespoons — would be frozen and stored for tests that might look at DNA, white blood cell counts or some as yet unknown component of a future researcher.
Will lay across his mother’s lap as Kathleen O’Leary, the head research coordinator, drew his blood. He looked concerned when it was his mother’s turn, but she soothed him as she lifted him up with one arm as her blood was taken from the other.
Their trip is worth the effort, Mr. White said firmly. Three days before their appointment, they had loaded up the family van with Will, his 4-year-old sister, Dorothy Rose, his wheelchair and new dual DVD players to come to Worcester.
Johns Hopkins University is the lead site, but its internal review board had not yet given approval for children to be included in the project. The other sites are the University of Texas Southwestern Medical Center in Dallas, the Multiple Sclerosis Research Center of New York, Barrow Neurological Institute in Phoenix and the Shepherd Center in Atlanta. Beth Israel Deaconess in Boston did not continue after the pilot phase.
Dr. Peter Riskind, director of the MS Center at UMass Memorial, has been involved in the project for about five years. He welcomes the approach, which he thinks can work well in parallel with individual research supported by organizations such as the National MS Society, on whose clinical advisory council he sits.
“We don’t have anything like this” collaboration, he said. “This is a very different approach that we hope will be very helpful in terms of fertilizing ideas. I think it’s wonderful.”
Project founder Mr. Mellor sees himself as part of a movement by patients and family members of patients to move research forward.
“It really takes people who feel the clock ticking,” he said.
For more information, go to www.acceleratedcure.org.
