Neurological Foundation Brain Bank

The establishment of the Brain Bank in New Zealand at Auckland University for undertaking diagnostic studies on Huntington's Disease was suggested by Professor Arthur Veale to Professor Richard Faull in 1981. Initially they confirmed the diagnosis of Huntington's Disease to the families and investigated the pattern of cell death in the basal ganglia.

The results of the chemical studies on the bequeathed Huntington's brains have shown specific chemical changes, even before any brain cells die. In talking with family members about the clinical changes, a correlation between cell death and specific behaviour is obvious.

This bank of Huntington's brains was available for the research team as the tools of molecular biology and biochemistry allowed closer investigation of the distribution of chemicals and genes in the basal ganglia. By using an animal model of HD they can study the effects of transplanting brain cells which make GABA.

These questions being asked by Richard Faull and his team will help in the areas of prognosis and the treatment of individuals with HD.

Who should consider the bequest of brain tissue

(i) Brain tissue should be bequeathed from any person in whom the diagnosis of Huntington's Disease is suspected. The studies will provide for a confirmation or an exclusion of the diagnosis of Huntington's Disease.

(ii) Brain tissue should also be bequeathed from a person who dies who is at risk of Huntington's Disease but hasn't developed symptoms, particularly if that person has had pre-symptomatic testing confirming the presence of the gene.

(iii) Brain tissue should also be bequeathed from any person who has a family history of Huntington's disease but who doesn't have the HD gene. This type of tissue will provide invaluable control information which will help clarify how the HD gene affects the brain.

One of the important questions Professor Faull wants to answer is, do the chemical changes in the brain appear before any brain cells die? To answer this question, they need to examine not only the brains of patients who die with Huntington's Disease, but also those who are at risk of or have the gene for Huntington's Disease (but who have not yet developed the disease) and who die of other causes.

Procedures for the Bequest of Brains to the Brain Bank at or near the time of death:

At the time of death or preferably when death is imminent, it is important for a member of the nursing or medical staff, or for a member of the family to contact Professor Faull or a member of the Brain Bank staff in the Anatomy Department at the Auckland Medical School (phone: 09-3737-599 ext. 6703) or at home (phone 09-8492-009) so that arrangements for the bequest can be discussed in detail. If you are unable to contact Professor Faull or a member of the Brain Bank Staff then a representative of the local Huntington's Disease Association should be contacted. The specific arrangements will vary considerably depending on whether the patient is located in Auckland or in some other part of New Zealand. In all cases, at the time of death arrangements will have to be made for a postmortem examination to remove the brain and other relevant tissue samples and for the rapid transportation of the tissue to the Auckland Medical School; arrangements for this are best handled at that time.