The fight against Huntington's Disease is an ongoing battle. This battle is being fought on many fronts, with a significant increase of people joining the cause from many walks of life. Medical professionals, researchers, caregivers, advocates, and last, but certainly far from the least, those that are our warriors – those stricken with this terrible disease. For most of us in the HD community this has been, or will be, the fight of our lives. As with any other war, we need tools and weapons to destroy this monster.
A very important tool in the struggle against HD are brain banks. One such brain bank is the Maritime Brain Tissue Bank located at the Dalhousie School of Medicine in Halifax, Nova Scotia, Canada. This particular bank was formed to collect brain tissues and allow researchers to access them to better understand the causes of dementia. Dementia is often present when someone is afflicted with many neurodegenerative diseases, including Huntington's Disease.
The MBTB collects and archives tissue from many different neurodegenerative diseases including:
Lewy Body Disease
Progressive Pronuclear Palsy
Multiple System Atrophy
Of course, none of this would be possible without people who donate brain tissue upon their death, which includes an autopsy to determine the type of dementia that is present. You can choose to only have an autopsy of the brain It is very important to note the importance of donations of "normal" brain tissue as well. So why donate your brain?
People in the HD community know that there is a 50/50 chance of passing the gene mutation on to a child, so some may see it as a way of continuing the fight even after death. It may simply be that a person wishes to help the community not only for HD, but for a variety of neurodegenerative diseases.
As stated previously, an autopsy of the brain is required before a donation can be accepted. According to the MBTB, "The chief reason for performing the autopsy is to confirm the diagnosis of dementia, but it is also important to have brain tissue for research. Normal "control" tissues are necessary to discriminate between changes related to disease and those associated with normal ageing. To confirm the diagnosis of dementia only half of the brain is necessary. Therefore, the other half can be donated to the MBTB for research. The decision to donate the second half of the brain tissue for research is made freely by individuals and/or their families."
It is much easier to plan for brain tissue donation in advance, but the decision can still happen at the time of death. Those who want to consider a donation of brain tissue should consult with their primary physician as well as their families before proceeding. This is a very sensitive topic. However, after doing the proper research to inform yourself of the facts, it may be something you would want to decide.