There is a great shortage of brain tissue for the study of many neurodegenerative disorders, including Parkinson’s disease (PD). Brain donations give researchers an opportunity to better understand these neurodegenerative disorders and provide insights on improving treatments and medications while increasing the odds of finding a cure.
To promote the importance of brain donation in the Parkinson's research field, the Parkinson's Foundation has partnered with the Brain Donor Project, a nonprofit dedicated to increasing brain donations to help advance science, leading to the treatment and cure of neurological, neuropsychiatric and neurodevelopmental disorders.
Why Should I Donate My Brain to Parkinson's Research?
Due to our aging global population, each year more people are being diagnosed with neurological disorders. Breakthroughs in brain disease depend on studies using donated post-mortem human brain tissue. Since one brain can provide tissue for dozens – sometimes hundreds – of neurological studies, an individual brain donation is a highly valuable gift that almost anyone can make.
What Are the Steps of Brain Donation?
- Decide this is the right option for you.
- Register to become a brain donor through the Brain Donor Project.
- Match with a brain bank in the National Institutes of Health (NIH) NeuroBioBank network. Receive forms and additional information needed to finalize your registration.
- Talk about your decision with your family so they can ensure your wishes are carried out. Consider using the NIH NeuroBioBank brochure for reference.
- Ensure your wishes are carried out by providing designated family members with the brain bank contact information. Your family will not incur any expense for the donation.
- Help hundreds of researchers further their Parkinson’s research.
Frequently Asked Questions
Q: How do I register?
A: First, complete this registration form at BrainDonorProject.org. Your information will then be shared with the appropriate brain bank in the NIH NeuroBioBank network, which will provide forms for you to complete and additional information about procedures at the time of death.
Q: What needs to happen when I die so my brain donation takes place?
A: The brain bank with which you’ve registered will provide an all-hours phone number for your family to call as soon as possible after death. The body will be transported to a location (often a nearby funeral home, mortuary, or medical facility) where a local pathologist can ensure the donation is properly carried out. The body will then be released per the family’s instructions.
Q: Does donating brain tissue impact funeral arrangements?
A: No. Brain donation will not interfere with funeral arrangements. An open casket viewing is still possible.
Q: Do I have to pay to donate?
A: Your family will not incur any expense for the donation.
Q: As an organ donor, isn’t my brain included?
A: No. Organ and brain donation are separate matters. You need to sign up for brain donation separately. Depending on the circumstances of your death, you may be able to donate organs as well as your brain for Parkinson's research.
Q: What are the incentives for brain donation?
A: Donation is voluntary and has no financial benefits. However, many donors and their families share a common satisfaction knowing that they are contributing to the health and well-being of future generations. Brain donation makes it possible to advance science and work toward cures for neurological diseases.
Learn more about brain donation by contacting the Brain Donor Project at 513-393-7878 or BrainDonorProject.org, or by calling the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).