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Science needs you
You can be the brain behind the breakthrough, whether you have a neurologic disorder or a healthy brain. Scientists need both kinds. And there is no cost to your family for you to donate this precious gift.
Why is brain donation so urgent?
One of every six people is suffering from a devastating neurological disorder or disease.
Diagnoses of autism and dementia are rising at alarming rates, addiction is a tragic epidemic and serious mental illness is crushing our families.
Our chances of developing a brain disorder increase with age—and Americans are living longer than ever. It’s easy to see where this is leading.
Donated brain tissue for neurologic study is critically needed to identify treatments and cures for all kinds of brain disease.
How does the brain donation process work?
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You Are Here
Pre-Registration
Click on the pre-registration button in the navigation (or click here) and complete the online form. You may do this for yourself or on behalf of another person. The form mainly asks for contact information, and to specify the nature of a neurologic diagnosis, if the potential donor has one.
Forms
The brain bank’s release and consent forms are then sent to the prospective donor within ten days, or sooner if necessary.
The forms must be completed, signed and returned to the brain bank in order for the person to be considered a registered future donor of that brain bank.
When death occurs
Referral
The Brain Donor Project then shares the donor’s information with the appropriate brain bank within the NeuroBioBank.
The NeuroBioBank is a structure of brain banks around the country that store and distribute brain tissue on behalf of the National Institutes of Health (NIH). The NIH is the primary U.S. agency responsible for biomedical and public health research.
Inform
Discuss this important decision with your family and/or friends. You’ll need to designate one or two people close to you to make sure your donation happens.
Mentioning brain donation in your medical directives or your will isn’t advised. Often those documents are not consulted until it’s too late. Registering to be a donor in advance is the best way to arrange to donate your brain.
Referral
The Brain Donor Project then shares the donor’s information with the appropriate brain bank within the NeuroBioBank.
The NeuroBioBank is a structure of brain banks around the country that store and distribute brain tissue on behalf of the National Institutes of Health (NIH). The NIH is the primary U.S. agency responsible for biomedical and public health research.
Forms
The brain bank’s release and consent forms are then sent to the prospective donor within ten days, or sooner if necessary.
The forms must be completed, signed and returned to the brain bank in order for the person to be considered a registered future donor of that brain bank.
Inform
Discuss this important decision with your family and/or friends. You’ll need to designate one or two people close to you to make sure your donation happens.
Mentioning brain donation in your medical directives or your will isn’t advised. Often those documents are not consulted until it’s too late. Registering to be a donor in advance is the best way to arrange to donate your brain.
Pre-Registration
Click on the pre-registration button in the navigation (or click here) and complete the online form.
You may do this for yourself or on behalf of another person. The form mainly asks for contact information, and to specify the nature of a neurologic diagnosis, if the potential donor has one.
Transport
The brain bank will coordinate transportation of the body to a local facility where the brain will be removed.
Often, this can be the funeral home that the family is using; if not, another nearby facility will be identified.
Release
Then the body is released to the family to proceed with funeral or cremation.
Notify
The brain bank will ask to be notified quickly upon death, ideally within the hour.
The brain bank will have provided an all-hours phone number for this purpose. If a funeral home is working with the family, contact info should be shared with both parties so they can coordinate transportation.
Removal
The brain bank sends a recovery specialist to remove the brain and ship it to the brain bank.
The brain is removed from the back of the head so as not to be disfiguring. Then it is shipped to the brain bank. The transportation to the facility, brain recovery and shipping to the brain bank is performed at no cost to the family.
Report
If the family requests it, the brain bank will provide a summary of neuropathological findings.
This document reports any diagnoses of the brain, the stage of the disease(s) and the regions of the brain impacted. Often in neurodegenerative diseases, this post-mortem analysis is the only definitive report of the patient’s diagnosis(es).
Notify
The brain bank will ask to be notified quickly upon death, ideally within the hour.
The brain bank will have provided an all-hours phone number for this purpose. If a funeral home is working with the family, contact info should be shared with both parties so they can coordinate transportation.
When Death Occurs
Transport
The brain bank will coordinate transportation of the body to a local facility where the brain will be removed.
Often, this can be the funeral home that the family is using; if not, another nearby facility will be identified.
Removal
The brain bank sends a recovery specialist to remove the brain and ship it to the brain bank.
The brain is removed from the back of the head so as not to be disfiguring. Then it is shipped to the brain bank. The transportation to the facility, brain recovery and shipping to the brain bank is performed at no cost to the family.
Release
Then the body is released to the family to proceed with funeral or cremation.
Report
If the family requests it, the brain bank will provide a copy of the neuropathology report at no cost.
This document reports any diagnoses of the brain, the stage of the disease(s) and the regions of the brain impacted. Often in neurodegenerative diseases, this post-mortem analysis is the only definitive report of the patient’s diagnosis(es).
“One man’s gift inspired the Brain Donor Project—and launched efforts to increase brain donation for research.”
The Brain Donor Project is the legacy of Gene Armentrout, who died in March 2015, after suffering from Lewy Body Dementia. Gene’s brain would be valuable for LBD research if donated upon death. When Gene’s family learned of the NeuroBioBank’s work to make available high-quality, well-characterized brain tissue for scientific study, the Brain Donor Project was born to support its efforts.
On April 28, 2022, Congressman Blumenauer and Rep. Fitzpatrick introduced a joint resolution to designate May 7th, Gene’s Birthday, as Brain Donation Awareness Day. We invite you to help us honor Gene’s legacy and raise awareness of the critical need for brain donation.
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