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“The human brain is the ultimate model for studying brain disease. It’s the Rolls Royce. I began to realise more and more that this gift of human brain tissue to us was going to allow New Zealand researchers to do revolutionary research.” Formalising the collection process Running a brain bank is challenging, particularly when it comes to collecting donated brains. Richard had to develop an intricate interplay between doctors, morticians and mortuaries so that brains could be received as soon after death as possible, to ensure tissue would be viable for research purposes. “We developed a donor package in collaboration with the families who were already helping us. The establishment of our Brain Bank was a true partnership between neurological researchers and the patients’ families. Ideally, brains need to be with us within 2 to 12 hours of death. The family commitment was amazing. They would arrange for nursing homes to call us even before they were notified of a death, to ensure we received the brain as soon as possible.” Expansion of the team also became necessary. The Brain Bank needed staff with people-skills to manage contact with families. They also needed Research Fellows, research assistants and geneticists. “We formed a research team around brain donation. Dr Russell Snell, now Professor Snell, came on board for genetic research, and then Professor Mike Dragunow became involved – he’s a molecular pharmacologist and neuroscientist. Lynette Tippett continued to gather the symptom background information for us.” After starting with a focus only on Huntington’s disease, the team began working on other neurological conditions, including Alzheimer’s disease, Parkinson’s disease, epilepsy, motor neuron disease and stroke. “We were ready to do world-class research that could lead to new treatments for brain disease, while also feeding information back to families that needed answers. This reciprocal relationship put our Brain Bank in a unique situation. Family involvement has been at the core of success for the whole enterprise.” Getting the Neurological Foundation involved By 1993 Richard realised his team were assembling a svery special collection of human brains affected by a range of different diseases. They had created a human brain bank that was a partnership between families, doctors, morticians, neurologists, clinicians and researchers. Later they added neurosurgeons to that list. But running the bank was eating into funds intended for pure neurological research. “I went to see Philip Wrightson, the medical director of the Neurological Foundation, with an idea. I said ‘Philip, you know we’re establishing a very valuable human Brain Bank here. Would the Neurological Foundation be interested in supporting it? Could you provide some finance, so that our research funding can be used just for research?’ and the rest is history.” The Brain Bank received its first grant from the Neurological Foundation in January 1994. Over the years, this financial support has expanded. Today the Foundation funds three and a half people and covers the costs of some consumables. The Brain Bank also receives grants from the Douglas Charitable Trust to support a Research Fellow. From a global point of view, the Neurological Foundation Human Brain Bank was unique because it was the first in the world to get tissue direct from families, including the symptom profile connected to the tissue, and the brains were collected very soon after death. “The Neurological Foundation and Douglas Trust have enabled the Brain Bank to grow and develop into the best in the world. Not the biggest, but the best from a usefulness point of view. Tissue from our bank is not only used here in New Zealand, it is also used by researchers fromMassachusetts Institute of Technology (MIT), Oxford, Cambridge, Harvard and other important medical research hubs.” “We always ask the families if they’re happy for tissue to go overseas and they are absolutely delighted. They say things like ‘Mum always loved to travel’ and ‘Dad’s brain is going to help the world’. There’s a wonderful level of trust between the Brain Bank and the families who’ve donated brains.” In New Zealand nobody is allowed to buy and sell human tissue, so when the Brain Bank decides to provide tissue to a research group there is no charge. However, researchers need to present a solid case to access the tissue. “We don’t give our tissue to everyone who asks for it. We must be convinced of the value of the research and the suitability of our tissue for its needs. For example, we have a top researcher from Switzerland visiting us soon. He’s looking at the molecular mechanisms of aggregates that kill brain cells in Parkinson’s and Alzheimer’s disease. We’ll meet with him and hear his case, then decide whether or not to provide him with tissue.” Cultural aspects of tissue collection For Māori families, donating a brain to the Neurological Foundation Human Brain Bank comes into conflict with traditional thinking. Māori organ donation rates are, at least anecdotally, very low. However, the Brain Bank has received brain donations from numerous Māori families. “We emphasise to these families that we are just the custodians of the brain. The brain is always owned by the families, who often come in to say a karakia before tissue is processed. Māori medical students who work with us also say karakia of their own before using tissue. Dignity and respect guide everything our technicians and researchers do with donated brains.” 8 Headlines