Helping families plan for a meaningful end-of-life experience is at the heart of what NFDA members do for families – and now there’s an additional way to help families find meaning in their loved one’s death, particularly when planning in advance.

The Brain Donor Project is a non-profit organization whose mission is to increase brain donation to advance science, leading to the treatment and cure of neurological, neuropsychiatric and neurodevelopmental disorders. Specifically, the Brain Donor Project supports donation to the brain banks of the National Institutes of Health (NIH).

Many people are not aware that there is a critical need for donated human brain tissue to help researchers solve the mysteries of brain disease. In fact, there are several myths about brain donation that are simply not true: 

• MYTH: If I sign up to be an organ donor, that includes brain donation. 
  • TRUTH: That’s not the case; separate arrangements must be made.
• MYTH: Whole body donation includes donating the brain for neurologic research.
  • TRUTH: While body donation programs support anatomical study, scientists agree that the brain is much more valuable for neurologic research. You must make separate arrangements to donate your brain for research.
• MYTH: Only diseased brains are needed. 
  • TRUTH: That’s not true! Healthy brains are needed in every study for comparison to brains affected by neurological diseases.
• MYTH: Brain donation will be disfiguring and we can’t have an open casket viewing. 
  • TRUTH: The brain is removed through the back of the head and does not cause any visible trauma; an open casket is still an option.
• MYTH: It will cost my family money if I donate my brain. 
  • TRUTH: When donating to a brain bank in the NIH’s NeuroBioBank, there is no cost to the family.

There are several benefits to the family when donating a loved one’s brain for research. Family members who have donated a loved one’s brain often find comfort in knowing that because of their gift, other families may not have to watch their loved one suffer from neurological diseases. 

Upon request, the brain bank will provide donor families, at no cost, a summary of neuropathological findings. That report identifies any diagnoses found in the brain, the stage of the disease and the region of the brain impacted. Once scientists know more about certain neurological disorders, this information may be of great value to family members.

The Brain Donor Project has information that you can provide to families, particularly those who are planning in advance, such as a double-sided, full-color 8.5 x 11” handout and a tri-fold brochure. To request that either, or both, be emailed to you, please contact info@braindonorproject.org. 

For more information, please visit www.braindonorproject.org. 

Many thanks for considering this way to advance science while helping families plan for a meaningful end-of-life experience.