Brain Support Network has helped over 350 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. Generally, brain banks do not accept brain donations from those diagnosed with more common disorders, like Alzheimer’s 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 350 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, 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). 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 to families with a financial need. See our FAQ for more about cost.
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. If possible, please contact us before end of life is imminent.
If end of life is days away, please provide some additional info when you contact us.