How Brain Donation Can Help Find a Cure: Everything to Know About Brain Banking

Brain donation is a critical resource for research on progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). When a person decides to take part in brain donation, they are giving a generous and meaningful gift to science.

Unlike other organ donation programs, brain donations do not go to living patients; instead, they go to research facilities. Scientists then study the tissue of these brains to better understand these disorders. This research can lead to better tests, therapies and even a cure.

Anyone diagnosed with PSP, CBD or MSA can donate their brain to the CurePSP’s Brain Donation Assistance Program. The program was founded in 1998 and has proudly supported the donation of hundreds of brains. CurePSP partners with the Mayo Clinic Brain Bank for our donations.

In fact, the Mayo Clinic Brain Bank collaborates with many national and international scientists who use human brain tissue as part of their research. These donations have enabled scientists all over the world to learn more about diseases like PSP, CBD and MSA.

People without a diagnosis are also encouraged to donate their brains. Scientists can learn about brain diseases by comparing healthy brain tissue to abnormal tissue. Programs such as the Brain Donor Project, a partner of the NIH NeuroBioBank, accept brain donations from people without a PSP, CBD or MSA diagnosis.

Choosing to make a brain donation is a major decision for a person and their family. The first step in making that decision is getting an understanding of what’s involved, how it happens and why it matters.

What Is Brain Banking?

Brain banking is the process of collecting a person's brain after death. It’s a complex procedure that must be performed with extreme care and detail.

Brain banks are facilities where donated brains are stored and studied. These facilities are designed with specific regulations to properly store delicate brain tissue.

Researchers work with these facilities to study samples of donated brain tissue so they can learn more about neurodegenerative disorders.

However, before researchers can begin studying the tissue, there are a few key steps involved.

• Preparation: Brain banking begins before the donor passes away. The donor, their next of kin and a care team put together a plan that makes sure the brain is safely and quickly delivered to the brain bank. Timing is critical to maintain the quality of the brain tissue.
• Collection: A special doctor, often a pathologist, carefully removes the brain tissue within several hours of death. Another team securely transports the brain to the brain bank. These specialists follow each step of a highly regulated procedure. They make sure to follow all scientific and ethical standards.
• Analysis: After collecting the donation, the brain bank must process the tissue. Then, they analyze it. The goal is to collect the largest amount of brain tissue that will be useful in research.
• Completion: Once the tissue has been fully processed, the family receives a diagnosis report, and scientists can begin using the brain tissue in their studies.

Why Brain Banking Matters

The human brain is very complex and hard to study while a person is alive. That’s because it’s part of the central nervous system (CNS). The CNS acts as the command center for the human body. It sends instructions and processes information to keep a person alive. Taking a sample of brain tissue would require surgery, and the risks are usually too high.

Because of this, researchers rarely collect brain tissue from living people. Instead, they use safer methods to learn about the brain without surgery. These may include blood tests, brain scans and cognitive tests. These methods can explain brain health, but don't provide as much detail as real brain tissue. That’s why brain banking is critical to brain research and progress.

Researchers need access to brain tissue to understand how brain diseases impact the body.  This research is then used to design tests to identify and treat disorders of the brain.

However, research is just one part of it. Brain banking is also helping scientists develop tests that can diagnose the disease while the person is still alive.

This is important because, currently, there is no test to confirm a diagnosis of PSP, CBD and MSA while the person is living. Most people are diagnosed based on symptoms or by ruling out other diseases. Brain banking is truly the only way scientists can confirm the diagnosis.

A confirmed diagnosis can offer closure to the person’s family, which is another reason brain banking matters.

When and How Brain Donation Happens

Because brain banking is such a complex process, families must prepare for a brain donation as far in advance as possible. Plans should be made months or even several years before the loved one reaches the end stages of the disease. When a family decides on brain donation near the end of the person’s life, it can cause stress and logistical difficulties during an already emotional time.

The process starts with signing up for a brain bank program. This allows the brain bank to ensure the person is a good candidate for donation. If they are approved for donation, the donor or their next of kin needs to provide consent to donate the brain. This must happen before the person passes away.

Once consent has been given, the donor’s family and a medical team put together a plan. As mentioned above, the plan makes sure the meticulous steps of the brain banking process are followed.

CurePSP’s brain donation program helps coordinate this timing. We work with local hospitals, funeral homes and brain banks to make the process smooth for families.

Other things to note about brain donation:

• Brain donation does not affect how a person looks for a funeral or memorial service. The process is done with care and respect.
• Once the report is finalized, the next of kin will receive an autopsy report. This report outlines the confirmed diagnosis and other information about their loved one’s brain health.
• Brain banking can be costly. CurePSP reimburses families up to $1,000 for the process.

Preparing for the brain banking process ensures the donor’s wishes are honored and the brain is safely delivered to the bank. While these details are not easy to discuss, they are important. The process can seem daunting, but families often say they gain peace of mind once the setup is complete.

Why Participate in a Brain Donation Program?

Brain donation is a vital resource in understanding these brain diseases. Still, it’s a big decision for families to make and a very personal decision. People decide to participate in brain donation programs for many reasons:

• A way to help others by donating to critical research.
• An opportunity to make a difference in an area of human health where there is a lot to learn.
• The comfort of knowing they contributed to finding a cure.
• A sense of hope for people living with PSP, CBD and MSA.

For the family, brain donation can offer peace after many years of navigating a complicated disease journey and caring for their loved one. Many families who have participated in this program have shared they felt a sense of comfort and closure.

How Brain Donation Helps CurePSP’s Vision

The vision of CurePSP is a world free of neurodegeneration. The study of brain tissue is critical in the path toward this goal. Researchers can use brain tissue to understand:

• How the brain and brain diseases work
• What causes brain diseases
• How they lead to disease symptoms such as issues with balance, changes in personality and difficulty with speech

This research leads to better tests, treatments and, ultimately, a cure.

CurePSP’s Brain Donation Assistance Program has helped advance the field of brain science. Brain donations are bringing us closer to a cure for neurodegenerative disorders.

Brain donation is a brave and generous act. It’s one of the best ways to help researchers fight brain diseases. It gives people an opportunity to leave a legacy in science that could be part of a future therapy.

Visit CurePSP’s website to learn more about brain donation.

References:

1. CurePSP. (n.d.). About CurePSP. https://www.psp.org/about-curepsp
2. Koeppen, A. H. (2024). Brain donation in neurodegenerative disorders. Biomedicines, 12(1), Article 133. https://doi.org/10.3390/biomedicines12010133
3. National Institute on Aging. (2023, July 3). Brain donation: A gift for future generations. U.S. Department of Health and Human Services. https://www.nia.nih.gov/health/brain-donation/brain-donation-gift-future-generations