Celebrating the world’s ‘best little brain bank’

Distinguished Professor Sir Richard Faull became visibly emotional when he described the ‘incredible gift’ of a human brain to the University.

Sir Richard was addressing a lecture theatre packed with 240 guests at a panel discussion on 4 July to celebrate 30 years since the beginning of the Neurological Foundation Human Brain Bank – aka the ‘best little brain bank in the world’.

“Those families have put their faith in us to be the custodians of the brains of their partners, their aunts, their uncles, their fathers, their mothers after death,” he said.

“It’s the most precious gift you can give to research. You couldn’t pay for it – it’s a priceless treasure.

“When we get a brain, the family comes with it… We go back to the family to get more information, talk to the doctors to get the person’s clinical history. And we are starting to put together the three pillars of research: community – family, whānau – in the centre; clinicians and hospital doctors; and the researchers. All those groups work together in brain research.”

When Sir Richard received the first brain in 1981, he could never have guessed that the donations would continue to trickle in from families who were hoping researchers would find out what was going on in the diseased cells of those donated brains and use those findings to offer their children a better future.

In 1993, Richard went cap in hand to the Neurological Foundation and in 1994 the foundation funded the Human Brain Bank, which later became an integral part of the University’s Centre for Brain Research (CBR).
 

The panel’s MC, journalist Mark Crysell, asked how CBR’s relationship with Māori had evolved.

Sir Richard said he has whakapapa to England and, on his grandmother’s side, to Te Āti Awa, Ngāti Rāhiri in Taranaki.

Building relationships with iwi has meant travelling to marae, where Māori feel comfortable, to talk about brain research, the latest findings and treatments, as well as establishing tikanga protocols for receiving brains. Kaumātua and kuia recite karakia and lift the tapu from donated brains, making them whakanoa (removed of tapu) for research.

The researchers’ visits to marae and strong connections with Māori have extended to establishing a satellite research clinic in Kaitaia – led by dementia researcher Dr Makarena Dudley (Te Rarawa, Ngāti Kahu) – to look after people with mate wareware, or dementia, in collaboration with Ngāpuhi health providers.

Sir Richard expressed his surprise and delight that the brain bank now employs five people and contains more than 40,000 blocks of brain tissue, all carefully catalogued, from more than 1,000 brains.

As part of succession planning, Professor Maurice Curtis has been appointed co-director “to ensure the brain bank goes on forever”, Sir Richard said.

Maurice told the audience he started his career as a radiographer with a dream of becoming a professional cyclist, but a pivotal experience changed all that.

While working as a radiographer, Maurice visited a rest home and saw a man in his late 30s or early 40s surrounded by people of a totally different age group. He got talking to a nurse and learnt the man had Parkinson’s.

It made the young Maurice think about the power and potential of research.

“If you could discover a drug or a treatment, you could potentially affect the lives of thousands or hundreds of thousands or even millions of people with Parkinson’s or another genetic brain disease.”

He met with Sir Richard and went on to become a CBR scientist.

Maurice described the exacting process of receiving a brain, where urgency is required after a person dies to ensure the tissue is viable for research purposes. The gold standard is two to 12 hours after death.

The brain bank gets requests from researchers all over the world, because of the quality of its tissue.
 

Dr Helen Murray, a CBR research fellow in anatomy and medical imaging, introduced herself, revealing she is also a representative ice hockey player and formerly captained the Ice Fernz for five years.

It was relevant experience, as she talked about the fact chronic traumatic encephalopathy – or CTE, a brain disorder likely caused by repeated head injuries – can only be diagnosed post-mortem and brain donors and their families are desperate for answers.

“We have only known about the disease for the past ten to 15 years. So we are looking at the brains of people who have had head injuries and asking how their brain is different from others, and how can we develop a test for it.”

Helen said she does worry about head injuries herself as a sportsperson, but acknowledged sport has come a long way in recent years to take steps to prevent brain injuries.

Finally, the granddaughter of artist Pat Hanly, Lillian Hanly, spoke about the many questions and soul-wrenching choices facing people whose forebears have died of a genetic brain disease – in Pat’s case, Huntington’s.

Lillian made a documentary, called Fifty Percent, about the decision of whether to get a genetic test to find out, as a young woman, whether she carries the gene that means she will develop the disease.

While she has not yet taken the test, many questions weigh on her and her family’s minds, chiefly whether there will be a cure.

The panel spoke about past medical breakthroughs and the constant discovery of new therapies. Recent breakthroughs in genetic therapies could prove useful with Huntington’s.

In question time, Bob Narev, ex-chair of the Hugh Green Foundation, asked a salient question: “Of the brains that you’ve been able to gather and that you’re working on, do any of them outlive their usefulness, or are they so preserved that they continue to provide material?”

Sir Richard explained that, as science changes, the brain tissues can yield new findings.

“Questions continue to come up and now, as Maurice has alluded to, we’re doing full genome scans, so suddenly that tissue becomes incredibly valuable.

“There’s other tissue – we have about eight freezers – [but] we have restricted resources and so we have to sometimes rationalise that collection. We do it in the best possible way.

“But we’ve got tissue which has been there from the very early days of the bank. It’s like having money in the bank; we can use that tissue in research, and we have a reservoir of knowledge.”

MC Mark Crysell wound up the event by acknowledging the other members of the team, donors, philanthropists and notably the Neurological Foundation.

And one final comment from Sir Richard undoubtedly resonated strongly with the audience. He talked about the importance of going back to communities and talking about advances in dementia care, which helps give people hope and supports them to continue with the most important work of all.

“We may not have a cure, but we know, for people with dementia, that care and support – love – is one of the magic bullets for fighting anything,” he said. “And never underestimate how important that is.”

Jodi Yeats