Centre for Brain Research


Community partners

It's estimated that one in five New Zealanders will suffer from brain disease in their lifetime.

Disorders such as stroke, epilepsy, Alzheimer's, Parkinson's, Huntington's, Muscular Dystrophy, Motor Neurone disease, Multiple Sclerosis and deafness affect hundreds of thousands of New Zealanders every year. Neurological diseases are among the top five most common causes of death and long-term disability. The cost to families and society, both financially and socially, is enormous.

That's why the Community Partners working with the Centre for Brain Research are so important. Across New Zealand this well-established network of charities and support groups help people living with neurological disease. Consisting of experienced professionals and supporters, they provide invaluable assistance to patients and their familes.

Each non-governmental organisation (NGO) advocates for one type of neurological disease but their ethos is much the same; that of guiding people through the health and social care systems. Services range from fundraising for research or to support people living with brain disease, lobbying, public awareness, education and health or social support. Senior clinicians and neuroscientists from the centre play an important role as patrons or advisers on scientific and medical issues.

These long-established alliances have been formalised into strong partnerships with the Centre for Brain Research. Consultation with community NGOs enables our neuroscientists to undertake the privilege of human tissue research. Our partners have facilitated the development of the Neurological Foundation Human Brain Bank as well as tikanga research protocols. Clinical and basic science researchers will work in synergy with community experts to increase understanding of these terrible diseases, and ultimately offer hope to those whose lives have been devastated by them.

All our community partners are not for profit organisations and rely on public support to carry out their work.

Community information


Aphasia

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Aphasia is the partial or total loss of the ability to articulate ideas or comprehend spoken or written language, resulting from damage to the brain caused by injury or disease. Around one third of people with a stroke are affected by the problem.

The Aphasia Association of New Zealand is a national organisation and registered charity, providing support, education, information and advocacy for the estimated 16,000 New Zealanders living with aphasia. Their aim is to assist people with aphasia, their families, extended whanau, and the wider community to communicate effectively and reduce the barriers faced by people with aphasia.  

Aphasia New Zealand

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Dementia

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Dementia is essentially brain failure. Physical changes in the structure of the brain cause alterations to people's memory, thinking, behaviour and emotions. The stark reality is there are over 40,000 people with dementia in New Zealand today.

Alzheimer's disease is the most common form of dementia, accounting for around 60% of all dementias. The disease is progressive, as abnormal proteins build up in the brain forming plaques which interfere with brain function. As the plaques increase, more brain cells die and so more of the brain is affected and symptoms worsen. The causes aren't clear but age, genetics and environmental factors all play a part. Currently there are very few drugs to help improve cognitive function, and the ones available have only modest effects at best.

Alzheimers New Zealand, Alzheimers Auckland and Alzheimers Counties Manukau help people living with dementia and their carers. Key workers support families as they journey through this progressive disease and ensure patients receive the best healthcare and treatment.

Alzheimers New Zealand

Alzheimers Auckland and Counties Manukau

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Epilepsy

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Epilepsy affects around two in every 100 people in New Zealand - that's around 80,000 people. The disorder can affect people of any age, and can also start throughout life. Epilepsy is characterised by seizures during which there are temporary bursts of uncontrolled electro-chemical activity within the brain.

The common causes of epilepsy include birth trauma, genetics, brain injury, tumours and infections. Yet for about half the people affected by epilepsy the cause is unknown. Seizures can take different forms depending on where in the brain it arises from. It may present as convulsions, changes in awareness or simply a blank stare. The person may remain fully conscious or be completely unaware of what is happening. For most patients seizures are controlled with lifestyle changes and anti-epileptic medications.

Epilepsy New Zealand works to raise awareness of the disease and reduce the stigma surrounding it. Local field workers help with community education and social support, and ensure patients receive the most suitable health and social care.

Epilepsy New Zealand

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Huntington’s Disease

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Once a diagnosis of Huntington's Disease (HD) is made, the whole family is affected. This incurable neurodegenerative genetic disorder is passed down through the generations, meaning each child has a 50% chance of inheriting it. There are around 300 people living with HD in the Auckland region but many more are at risk of developing it.

Huntington's disease is caused by a mutation on the Huntington gene. Extra repeats in the genetic codes mean the gene doesn’t function correctly and produces a defective protein. This disrupts normal brain cell activity and causes the movement, mood and behavioural symptoms characteristic of this progressive condition. HD doesn’t discriminate and can affect men and women from all races and ethnic groups. Symptoms usually occur between age 35 to 40, meaning multiple generations of one family can be affected at any one time.

The Huntington's Disease Associations of New Zealand work to improve the quality of life for each family affected by HD. Family liaison coordinators help patients seek the right social and health services, and also guide other family members through counselling and genetic testing procedures. While there is no cure, the charity aims to help sufferers reach their maximum potential at each stage of the disease.

Huntington's Disease Associations of New Zealand

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Motor Neurone Disease

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sThere are around 250 people living with Motor Neurone Disease (MND) in New Zealand. MND is a group of conditions in which nerve cells controlling muscles of movement are destroyed. Without any nervous system stimulation, the muscles eventually weaken and waste away.

MND may start with reduced strength or coordination in an arm or leg, or difficulty speaking or swallowing. As the condition progresses the loss of movement increases and other areas, such as breathing, may be affected. MND may affect adults of any age but is more common after the age of 40. Both men and women are affected, although it is more common in men. MND is a progressive condition and life expectancy varies between two-four years. However, some people do live longer than this.

The Motor Neurone Disease Association of New Zealand supports people living with MND and their carers, providing practical advice to manage symptoms as well as social advocacy and liaison with health professionals.

Motor Neurone Disease Association of New Zealand

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Multiple Sclerosis


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Approximately one New Zealander in every 1000 has Multiple Sclerosis (MS). This disease of the central nervous system occurs when the protective cover surrounding our nerves, called the myelin sheath, becomes scarred in discrete patches called plaques. Message transmission in the brain and spinal cord becomes distorted, resulting in sufferers losing control over parts of their body.

MS is known as a 'prime of life' condition as people tend to be first diagnosed between the ages of 20 and 40. Typical symptoms include loss of balance or coordination, weakness, numbness or pain. The causes of MS are still unknown, however research suggests it may be linked to a reaction to a virus even years after infection, an auto-immune reaction to our own tissue, and genetic susceptibility. People in cooler climates, women and Caucasians are more likely to suffer from the disease.

MS Auckland Region and MS New Zealand aim to improve the lives of people living with MS. While there is no cure yet, the NGOs aim to encourage patients and their families to manage the condition through a combination of medication, physiotherapy, good nutrition, rest and moderate exercise.

MS Auckland Region

MS New Zealand

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Muscular Dystrophies

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It’s estimated that 4500 people in New Zealand are affected by a neuromuscular condition. This broad group of conditions all have one terrible symptom in common, that of a disabling loss of muscle strength.

Neuromuscular conditions usually have a genetic origin and lead to underlying problems with nerve tissue. The disability and other effects are always progressive, resulting in problems with mobility, speech, breathing and heart function. Symptoms can become apparent at any age, from soon after birth through to later in life. While there are limited treatments available, there are no cures.

The Muscular Dystrophy Association offers specialised information about over 40 types of neuromuscular conditions, which can often be very rare. Field workers help families to access healthcare and also offer support groups. The association actively campaigns for disabled rights and helps people to practically manage their situation.

Muscular Dystrophy Association

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Parkinsonism

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One New Zealander in every 1000 is affected by Parkinson's disease. This movement disorder occurs when insufficient quantities of the chemical dopamine are produced in the brain. The key neurological symptoms include tremor, slowing of movement and difficultly walking.

Parkinsonism is an umbrella term for the symptoms caused by a number of different conditions, with 80% of people diagnosed as Parkinson's disease. Much is known about the progression of the disease, which results from the slow degeneration of nerve cells originating movement, called the substantia nigra. Yet, little is known about what initiates the deterioration of the neurons at the start of the disease. Treatment usually involves drug replacement for the dopamine. Research continues into both the causes and new therapies.

Parkinsons New Zealand and its branches such as Parkinsons Auckland have established long-standing links with researchers and clinicians in Auckland. The society helps people to develop the skills to manage the disease and retain a good quality of life.

Parkinsons New Zealand

Parkinsons Auckland

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Stroke

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Stroke affects around 8,000 New Zealanders every year and is the third biggest killer in New Zealand. Stroke is the major cause of long-term adult disability and for many of the 56,000 stroke survivors in New Zealand, disability can be a fact of life.

A stroke is usually due to a sudden interruption of blood flow to part of the brain, causing the affected part to stop working and eventually die. Basically, it's a brain attack. People of all ages can suffer strokes. While research is underway to prevent strokes and to improve rehabilitation afterwards, the effects can still be devastating. People may be left without the full use of their body, losing the ability to walk or the ability to talk.

The Stroke Foundation of New Zealand works to help survivors of stroke and provides vital support services for patients and carers. They also lobby to raise awareness and funding for better clinical services and research.

Stroke Foundation of New Zealand

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