Brain Support Network has helped over 650 families in the US and Canada successfully accomplish brain donation. We are honored to assist your family, too.
Whether you are planning in advance or thinking about this when end of life may be days away, thank you for considering brain donation! We are sorry for the stress you are under: coping with neurological decline is not easy. We hope to make the brain donation go as smoothly as possible.
The two key reasons to donate your brain or a loved one’s brain are:
- To obtain a confirmed diagnosis (from an autopsy report), and
- To support research into the causes, treatments, and cures for neurodegenerative disorders.
The only way to obtain a confirmed diagnosis is through post-mortem tissue examination. At least half of the families we’ve assisted have been surprised by the confirmed diagnosis. Clinical diagnostic accuracy varies from 22% to 86%. A confirmed diagnosis, delivered via autopsy following brain donation, can bring peace of mind to children and grandchildren.
Many families believe that generously enabling research is the ideal way to turn a sad situation into a positive. Families report a strong sense of satisfaction at having done something to fight back against neurodegeneration. One family viewed brain donation as life-affirming.
Families are right to feel proud of their loved one’s generosity to the larger community.
Today, brain banks focused on neurodegenerative diseases are interested in brain donation from persons with diagnoses such as Lewy Body Dementia, Progressive Supranuclear Palsy, Multiple System Atrophy, Corticobasal Degeneration, Parkinson’s Disease, Frontotemporal Dementia, etc. There is also interest in those with brain cancer (glioblastoma) and those who are neurologically normal.
Generally, brain banks do not accept brain donations from those diagnosed with more common disorders, like Late-Onset Alzheimer’s (without family history) and vascular dementia. For Alzheimer’s Disease cases, exceptions are made for those diagnosed before age 59 (current age can be higher) or those with a family history of AD or other dementia (usually two first-degree relatives plus the intended donor). See our FAQ for more about eligibility.
Of the 650 families we have helped, most brains have been donated to the Mayo Clinic brain bank in Jacksonville, Florida. Some have been donated to the Mayo Clinic brain bank in Rochester, Minnesota. We have also helped people donate tissue to other brain banks: University of California (San Francisco and Davis), Columbia University, University of Miami, Harvard, etc.
Cost of Brain Donation
In California, the average cost to families to accomplish brain donation is about $1,000. The average cost to families in other parts of the US is about $800. These are fees paid directly to the pathology specialist and funeral home (or cremation organization). BSN charges no fee, but gratefully accepts donations from families who are able.
For a few disorders (PSP, CBD, MSA), a grant of up to $750 is available to families from affiliated non-profit organizations, upon submission of receipts. For some disorders (PD, LBD, FTD, Pick’s, PPA), a grant is available from BSN to families with a financial need. See our FAQ for more about cost.
Our nonprofit, Brain Support Network, charges no fee, but requests every family we help to make a charitable contribution of at least $500 so that we may help another family with brain donation. In this pay-it-forward approach, past families’ contributions allow us to help your family, and your family’s contribution allows us to help another family or families. For $500, we can help one family; for $1000, we can help two families; and so on. Families without the financial means to donate themselves often request memorial donations to BSN in lieu of flowers. Some families both request memorial donations in lieu of flowers, and then donate up to $500 or $1000 or whatever amount suits them.
Process of Brain Donation
While each brain donation arranged by Brain Support Network is individually organized, families and our organization follow specific critical steps to ensure brain donations are completed successfully.
Download our Process for Brain Donation sheet for a simple outline of the important steps listed in chronological order.
BSN is generally able to determine the prices charged by service providers (e.g. autopsy specialist) before the family decides to proceed or not. Even the name of the eventual donor isn’t required until after this step.
Brain Donation Brochures
We have two 8.5 x 11-inch tri-fold brochures describing brain donation. These brochures are suitable for color or black-and-white printing. Download our two brain donation brochures:
Contact us to investigate brain donation for your family. Of course, it is less stress for your family if you contact us before end of life is imminent or has occurred. In any case, we will help you as best we can.
ARRANGE A BRAIN DONATION
…to receive a confirmed diagnosis and to
contribute to the search for a cure.
end of life is days awayend of life is up to 6 months away