Brain Donation Information for MSA Families

There are two primary reasons to arrange to donate a multiple system atrophy patient’s brain. One is to confirm the diagnosis, and the other is to assist researchers in finding a cause, and ultimately a cure, for multiple system atrophy.

At this time there is no definitive test for multiple system atrophy while the patient is still alive. Without brain examination, the family may be left with nagging worries about the real cause of the illness and may have concerns that there was something more that could have been done to help their loved one.

Brain donation is also critical for research. Most of the breakthroughs in neurodegenerative disease research have been made because of these generous final gifts. Researchers cannot make progress without being able to examine, in detail, the changes that happen in these diseases, and lack of available brain tissue may slow the important search for a cause and cure.

Some facts about brain donation

• The brain is removed through a small incision in the back of the head and preserved according to instructions from the receiving institution. The body of the deceased is not disfigured and the family can choose an open casket if they wish to do so.
• The cost for the pathologist to remove the brain is usually between $500 and $1,000. There is generally no charge for the brain autopsy itself.
• Brain retrieval needs to occur within 24 hours of death, so making arrangements in advance is crucial.
• The brain is preserved and can be shipped to distant laboratories for examination if desired.
• The institution performing the brain autopsy generally shares a detailed report of findings with the family.
• Many people are overwhelmed by the idea of finding a facility to do the brain autopsy and finding someone to do the retrieval, and decide not to pursue brain donation even though they would like to.

Our partner organization, The Brain Support Network can help families make plans for brain donation by identifying the lab to do the brain autopsy and finding a pathologist or other qualified individual to do the retrieval.