Brain Donation Information for the MSA Patient

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 on brains donated after death.  Researchers cannot make progress without being able to examine, in detail, the changes that happen in these illnesses, and lack of brain material can slow the search for causes and cures.

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 choose 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 brain bank interested in MSA brain research and coordinating all the details (such as finding a person and a place to do the retrieval).  Brain Support Network can help families make advance plans for brain donation.  Brain Support Network is a 501(c)(3) non-profit organization; contact BSN at:

Multiple System Atrophy Brain Donation Support

 

Brain Support Network

PO Box 7264
Menlo Park, CA 94026

Email: msabraindonation@brainsupportnetwork.org

Telephone: (650) 814-0848

Fax: (650) 233-9278