It's a rainy Wednesday morning, and dr. Andrew Affleck is driving more carefully than usual on his way to the Neuroscience Research Australia building in Randwick.
It's not just the slippery, crowded roads that put your attention to your caution; in the trunk of his car, encapsulated in several layers of protective container and nestled in the ice, is the brain of a human being who was alive only a few hours earlier.
It is not a common brain – if any brain can be considered ordinary – but one that has a deadly secret buried inside. The individual who until recently was incorporated into this mass of pink, gray and white tissue died of one of the neurodegenerative diseases that are increasingly a cause of death for our aging population. Maybe it was Alzheimer's that gradually deprived them of their connection to reality, or frontotemporal dementia that transformed their personality, or Parkinson's disease that rocked the body and mind.
Whatever has claimed your life, this body is on its way to Sydney Brain Bank.
"I really hope this is the brain that will get us across the line," says Affleck. At Sydney Brain Bank, located in NeuRA, the hope is that scientists will be able to collect new and vital information from their tissues. And maybe, one day, that perception leads to better understanding, better treatment or even a cure.
"Every donation, bringing the tissue back to the lab, I say to myself, I really hope this is the turning point," says Affleck, an associate researcher at Sydney Brain Bank.
"This is really exciting and makes you want to do the best you can; not only for science, but for the family itself. "
The interior of Sydney Brain Bank looks like a typical research facility: carpeted glass-walled offices and labs where every available space is filled with equipment, cups and pastes, but everything is scrupulously clean and tidy. There are no bottle brains or any Hollywood beauties that can give the visitor any notion of the nearly 600 brains – and some spinal marrow – that have passed through the hands of the scientists here.
Several floors below the glittering labs, in a basement that is usually accessed by a freight elevator, is a room the size of a typical boardroom. It is full of movable shelves that can be separated and moved with the touch of a button.
The shelves are lined with sealed white plastic buckets, each containing half a brain that has been preserved in formalin. Dr. Claire Shepherd, director of Sydney Brain Bank, is almost apologetic about it.
"The buckets do not look very glamorous or scientific, but years of experience have told us that they are the best vehicle for storing brains," she explains.
The room is temperature controlled in a comfortable heat, and is totally silent, plus some electronic beeps while the electric shelves are separated. It is a peaceful space; like being in a room full of deep sleep.
The other halves of each of these preserved brains are stored upstairs in ultra low freezers at -80 degrees Celsius.
Sydney Brain Bank is one of many such facilities throughout Australia and around the world whose aim is to collect brain and spinal cord tissue from people affected by a variety of diseases and conditions. This tissue is made available to researchers seeking answers to the questions about why these diseases occur, how they progress, and what can be done to treat, stop or prevent them.
The focus of Sydney Brain Bank is neurodegenerative diseases; in particular, dementias and movement disorders – such as Parkinson's disease, motor neuron disease, Huntington's disease and progressive supranuclear palsy.
Brain donation is a different beast from organ donation, not least because one is for transplantation, while the other is for research.
"Many people think they're on the organ donation card and they ask me," Can I donate my brain because I'm an organ donor? "Says Shepherd. But donating a brain is much more complex because for scientists to get the most information from donated tissue, they need to know about the donor's life before they die.
Donors linked to Sydney Brain Bank are recruited through a network of specialist neurologists and clinics around Sydney who collect standardized information about their patients, such as their medical history and the unique history and characteristics of their illness. These data include blood tests and regular imaging with technology such as MRI.
"So the value of the tissue is actually enriched because we do not just have tissue, but we have all that information about how the individual looked like in life, and we also standardized information about groups of individuals," says Shepherd.
However, the donor's personal identity and life are hidden from the staff and researchers working with the tissue. It has to be this way, not just for privacy reasons, but also for the benefit of the team that deals with the donated brains.
Shepherd recalls the family member of a deceased donor who sent the World Bank a home booklet on the life of the donor and who they were. Seeing this snapshot of donor life was an intensely emotional experience for Shepherd, and that emotion is still very close to the surface.
"I am the guardian of brain tissue," she says. "That does not mean that I'm insensitive to who that person is, of course, but I do not have that close relationship and it would be dangerous if I thought about it because it would affect me on that level every day."
Time is the enemy of organ donation. The longer an organ – heart, kidney or brain – remains inside a body that is no longer supplying life-giving oxygen, the more the tissue breaks and the poorer the quality of information can be harvested from it.
Sydney Brain Bank employees carry pagers with them 24 hours a day, seven days a week, 365 days a year. When a donor dies, one of the earliest calls made by the family, caregivers or medical staff is for this pager service.
Things have to happen quickly. Whoever is on call then contacts the morgue where the body will be taken, and with the funeral service.
"One of the main things we intend to do is really not disturb the funeral arrangements for the family … the best we can, we try to expedite the donation for them so there will be no delay," Affleck explains.
Removal of the brain – and the spinal cord, if this is also being donated – happens in one of the few remaining in operation in Sydney. It is a relatively quick process, a few hours at most, then Affleck or whoever is on duty takes the tissue back to Brain Bank.
When it arrives, the brain is divided into two hemispheres. Half is frozen along with tissue samples that are dissected from regions of the brain that are of particular interest to the researchers. The frozen tissue can be further studied under the microscope, but more importantly, freezing preserves the DNA, proteins and biochemistry of the tissue.
The other half of the brain is immersed in formalin for two weeks, which allows the liquid condom to fully penetrate the brain. Once the process is completed, this hemisphere is stored in 3 mm sections on thin sheets of acetate in the white buckets that line the basement shelves. At this point, the Brain Bank team also collects smaller samples, or "blocks," of different parts of the brain that are of interest for future studies.
"There may be softening or discoloration of the tissue or something that really needs more research under the microscope," says Affleck. These smaller sections are also treated with a variety of stains that highlight the presence – or absence – of proteins and structures.
The final step is a complete, standardized report linking what the Brain Bank observed about the tissue with what was known about donor life and disease. This information is the starting point for researchers interested in studying the tissue. Maybe, somewhere in those folders, slide boxes, tissue samples and data pages, is the answer that they are looking for.
What about donors and their families? What are they looking for when they tick this box and consent that their loved one's most personal organ is removed after death?
Lucille Bloch had never heard of brain-raising until she attended a lecture by Professor John Hodges, who heads a research group at NeuRA.
"He said that dementia is growing in numbers, we have to think about creating a cure for dementia, and what we need is people with dementia, once they are dead, we need their brains," she recalls.
Lucille's husband, Keith, was diagnosed with frontotemporal dementia. After the lecture, she sat down with him and told him what she had learned.
"And he said," Well, my dear, we have four children at the moment and two grandchildren, I'm going to give my brain because I want to help if our kids can and others [get it].
Keith died 10 years ago, but Lucille still occasionally visits NeuRA. "I'm part of it," she says. The experience made her a champion of brain-donation and increased awareness and understanding of dementia. When your time comes, it will also give your brain.
Lisa Webb's husband, Bob, died about two years ago of what was diagnosed as primary progressive aphasia – a gradual loss of language skills. However, this was actually a symptom of Parkinson's disease, a diagnosis that was not revealed until after his death.
Shortly after Bob's diagnosis, the subject of brain-donation came up during a visit to NeuRA for testing.
"For him, the brain was only part of the body; He always liked to donate organs and the brain was just another organ, "says Lisa. "I think I have the same vision; I looked at it and thought, if there's anything we can do to help other people not have to go through it, then let's do it. "
The thought that Bob's tissue lies somewhere in the Sydney Brain Bank and is helping the researchers to give a sense of comfort.
"There's a bit of me that's going there, actually he really did not leave, like he's still fine, and that's really a good thing to hold on to."