Brain & DNA Banks
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 A mind is a terrible thing to waste.
This information is connected with the Huntington's Disease Links 
 
The greatest gift to research and future generations is the donation of the Huntington's disease patient's brain, and even the brain of an unaffected person. 

Few people outside of scientific circles know of the existence of brain bank's; even fewer understand its irreplaceable role as an aid to research. Compounding the problem is the negative perception some people have of brain tissue donation. While traditional organ donation offers the prospect of saving a life by way of a heart or liver transplant, or of bringing sight to the blind with a cornea transplant, donated brains are used for research only. The rewards are less immediate and less dramatic.

By making a donation, you [or your heirs] could help heal some of the worst diseases in the world, including Huntington's!  For information on donating a brain or storing DNA samples, please read further.  For information on becoming a part of the biggest database for HD research, please read about the HD Roster.  Also, see Frequently Asked Questions, a listing of  Brain Bank Depositories and additional information on Storing DNA Samples

They Found The Gene

Obtaining an autopsy at death in order to examine the brain is no longer the quickest and most definitive way to make an absolutely firm diagnosis of Huntington Disease.  We know that since the discovery of the HD gene in 1993, getting the DNA test is now the gold standard in determining if a person has HD. 

Why then do we continue to request that individuals with Huntington disease and their families to consider brain donation? 

The answer is that a great deal of research is still being done using brain tissue obtained at autopsy. 

Brain banks collect brains from donors  and distribute tissue to researchers trying to understand causes of diseases. This research is aimed at trying to understand how the mutated gene can, over a period of many decades, cause malfunction and death of neurons in certain parts of the brain.  This damage to neurons in the brain is the cause of the symptoms of Huntington disease.  Understanding in detail the molecular pathways that lead to neuron death will allow treatments to be devised aimed at stopping this brain deterioration and even preventing it before it starts. 

Participation in brain tissue donation programs is still invaluable for confirming the diagnosis of HD in families and for continued research.

Remember, there is still a critical need for brain tissue from persons affected by Huntington's Disease. The importance of each individual brain donation cannot be stressed too strongly.

Your generous gift, made at a sad time, may give the person's death great meaning. Each one moves us closer to the day when no one will have to die from Huntington's disease.

Privacy Issues

Brains are identified by number, not name. In all cases, the identity of each donor and potential donor will remain strictly confidential.

About Brain Banks Depositories

Brain donation for research is not a widely publicized subject, so many physicians and pathologists are not familiar with brain banking.  Contacting the pathologists at your local hospital and identifying the professionals in your area who are sensitive to the need for brain donation can greatly facilitate the donation process. 

The brain may be disease-free or it may be from an individual who has died in the early, middle, or late stage of a particular disease. Researchers from around the country contact brain banks regularly to find brain tissue that fits a specific criteria for their research.  Please be sure to ask your neurologist if the facility he/she is affiliated with has a Brain Bank. You can then get information regarding the specific protocol and steps to take regarding brain donation at a facility that may be more convenient and closer to your home.

If you are having trouble identifying a cooperative pathologist, please visit this College of American Pathologists website to obtain a phone number for those in your community. 

Unaffected Brain Donors Needed

The nature of research requires that scientists need "normal" brains, too, from healthy people of all ages.  Brain tissue is essential to research. Techniques like functional Magnetic Resonance Imaging (fMRI) or Positron Emission Tomography (PET) scan the brains of living people, watching the brain at work. But fMRI and PET can't peer into nerve cells.

Understanding the chemistry of cells in diseased regions of the brain what proteins are present, which genes are active can help scientists determine what went wrong, and develop diagnostic tests and treatments.

 "The problem is that families with members who have a brain disease are working with private foundations and already thinking about brain donation and research and so it is easier to reach out to them," says Benes. "But there is no foundation that advocates for a normal brain."  Francine Benes, is a professor of neuroscience at Harvard Medical School in Boston and their Brain bank's director.

The ideal normal brain, according to Benes, comes from an individual without a history of head trauma, seizure, dementia, delirium, or drug or alcohol abuse.