Best Way To Help Researchers Find Answers Is To Donate Your Brain

(7-22-18) I am an organ donor, but I didn’t know that in many states you have to fill out a special form to donate your brain tissue. Guest blog submitted by Dr. Jim Hayes, President NAMI SC and a NAMI National Board member. Thank you Dr. Hayes.


The time to address the elephant in the room of Serious Mental Illness is NOW.

Mental health advocates are in a current state of confusion, have vastly divergent opinions and contentious attitudes about why we have so little progress in serious mental illness. Our family lives with serious mental illness every day. Rapid cycling bipolar 2 disorder affects our beloved family members. We have progress and setbacks every time the season changes, when there is prolonged rainy weather, bad winter or any form of setback.

We in NAMI want answers also.

It is so frustrating that many are compliant with meds, therapy and get great family support…but still there are bad times and they don’t have recovery. We blame the system, the providers, the insurance companies or the government because we believe Dr. Joyce Burland that we know we didn’t cause it!!

How about those individuals who don’t respond to treatment or those with anosognosia or paranoia? Should we use AOT, which is a misnomer, it is not assisted, but forced treatment. So what can we do as individuals to make a difference? That difference will be research using donated brains.

This is a topic we as mental health advocates don’t talk about: brain tissue donation.

So why is it important to talk about this issue?

As we all well know, progress has been made in most other medical illnesses with survival and recovery likely for many previously fatal illnesses such as cancer, heart disease, diabetes and others. Survival is at a record high for so many of these illnesses, such as childhood leukemia. Back in 1972, 30% of children with acute lymphocytic leukemia survived. Now in 2018, 92% survive.

So what is the difference?

Research! Tissue was studied, genes were discovered, abnormal enzyme systems were found and new therapies were tested on tissue then children suffering from these illnesses. Also, stigma was reduced, parents were included in the treatment teams, walls between treatment team members were shattered and children recovered.

Why can’t we do the same for brain disorders? We can and must do so much better! Why can’t we work together better? Why aren’t loved ones included in treatment teams? Why is there so damned much stigma? NAMI must work on these issues! We must work together on all these issues!

Research is critically important!

We need brain tissue to study much like we needed bone marrow to study for leukemia. Bone marrow is relatively easy to get, brain tissue is hard to get. Unfortunately, it is not possible to obtain brain tissue from a living person. Post mortem brain tissue can help close the gap in research. Neuroscientists need tissue from persons living with serious mental illness as well as other brain disorders, brains from their relatives and brains of people with no brain disorder diagnoses.

So what can we learn from post mortem brain tissue? Why do people develop SMI? Why do some develop anosognosia and others don’t? What can we do for persistent serious treatment resistant SMI? The ultimate answer may be found in study of post mortem brains.

What about addictions? We really don’t know enough about addictions and what causes one person to become addicted after minimal exposure to opioids and another to walk away after weeks of doses. What can we do to prevent fatal addictions?

Why do we not talk about brain tissue donation? Stigma? Superstition? Fear? Brain tissue cannot be transplanted so there should be no fear of someone else having our brain and therefore our identity.

There is much misinformation around the whole process of brain tissue donation.

Being an organ donor does not automatically include brain tissue. There is a separate process of consent involved.

Because brain tissue cannot be transplanted many organ donation regulations don’t even mention brain tissue except for “tissue for research and education” The focus of these regulations is procuring organs to be transplanted. Tissues for research purposes are a different matter.

Please visit the National Institute for Mental Health (NIMH) website for more information about this whole process. The quickest way to sign up to be a brain tissue donor is through the Brain Donor Project:

I am writing this blog as a concerned father and grandfather not as a spokesman for NAMI, Donate Life or any other organization.

I am concerned because we have not made enough progress in understanding Brain disorders and our loved ones are dying while we dialogue about better treatments, legislation etc. We do need better legislation, education and all those things but we must find the real causes.

Let’s all work together and see some positive results for our loved ones! It’s Time!

FROM NIMH website

The NIH NeuroBioBank: Addressing the Urgent Need for Brain Donation

 • Science Update

By Dr. Diana Bianchi (NICHD Director), Dr. Joshua Gordon (NIMH Director), and Dr. Walter Koroshetz (NINDS Director)

When unraveling the complexities of neurological, neurodevelopmental, and neuropsychiatric disorders, there is no substitute for studying human brain tissue. Brain donation is critically important, now more than ever. The more brain tissue available for research, the faster science can advance toward a better understanding of how to prevent, diagnose, treat, and cure disorders of the human brain. The NIH NeuroBioBank is a central resource to coordinate brain donation and the distribution of tissue to qualified researchers. These efforts depend on the availability of post-mortem brain tissue. Yet, relative to donations of other organs for transplantation and research, brain donation is severely lagging, both from healthy people, from people with brain disease, and especially from children. Through partnerships with not-for-profit organizations like the Brain Donor Project, NIH aims to raise awareness about the importance of post-mortem brain donation and to simplify the process of becoming a donor.

NeuroBioBank partner logos In the past, brain tissue repositories funded by U.S. federal, private, and nonprofit institutions have been primarily disease-focused and somewhat limited in their distribution of tissues. In 2013, three NIH institutes came together to build a network of biorepositories to collect and distribute brain tissue to investigators across the country for research on a variety of brain disorders. The NIH NeuroBioBank was launched with support from the National Institute of Mental Health (NIMH), National Institute of Neurological Disorders and Stroke (NINDS), and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). The major goals of the NeuroBioBank are to enhance the distribution of high-quality, well-characterized human post-mortem brain tissue to investigators and to increase awareness of the value of brain donation among the public. The NeuroBioBank provides access to the collections of six partner sites, as well as additional resources to facilitate research studies, including donor medical records and clinical data sets (when available) and tissue quality metrics. Each NeuroBioBank site collects approximately 100 brains per year, offering researchers access to specimens across a broad range of diseases, and since 2014, the NeuroBioBank has fulfilled more than 450 requests for tissue for research.

Each donated brain is a precious resource, with the potential to provide tissue to hundreds of investigators. At the same time, each donated brain is ultimately non-renewable, and more are needed to keep pace with opportunities for new studies. Indeed, there are several disorders, including Parkinson’s disease, traumatic brain injury, chronic traumatic encephalopathy, myalgic encephalopathy/chronic fatigue syndrome, autism, and Down syndrome, for which there are vastly inadequate resources to meet the research demand. Access to brain tissue from healthy donors of all ages also remains a challenge, both for studies of normal brain structure and function and for use as controls in disease-focused research, where the ability to compare tissues from people with and without a disease is critically important.

cover of NeuroBioBank publication titled Why Brain Donation? Today, powerful new technologies allow researchers to examine molecular and micro-structural changes in psychiatric, neuro-developmental, and neuro-degenerative disorders that were previously undetectable, offering tremendous opportunities for research using human brain tissue. A study from Christopher Walsh’s laboratory at Harvard Medical School sequenced the full genome of individual neurons from postmortem brains and uncovered remarkable genetic variation from cell to cell. Neurons last for decades, and as their genes are repeatedly transcribed over time, they acquire changes called somatic mutations. Moreover, genes important for neuronal development and function appear to be most vulnerable to mutation. These findings have helped to propel further investigations to understand the impact of somatic mutations in human brain development, function, and disease. In other examples, scientists have used postmortem brain tissue to understand a  genetic risk factor for schizophrenia and to show that military members exposed to blast injury exhibit a distinct pattern of scarring that could account the typical neuropsychiatric symptoms of traumatic brain injury and post-traumatic stress disorder. Other studies have demonstrated differences in the development of cells important for the formation of white matter in Down syndrome and identified pathways involved in learning and memory in Down syndrome and Alzheimer’s disease, and have implicated brain structures such as the anterior cingulate cortex in autism spectrum disorders.

The prevalence of neurological, neuropsychiatric, and neurodevelopmental disorders continues to rise worldwide. These disorders can take a terrible toll on the quality and length of life for affected people and their families, but wide knowledge gaps continue to stand in the way of effective treatments. Research using human brain tissue has the potential to identify new disease pathways and targets for therapeutic intervention. To be successful, such studies will require large numbers of high-quality, well-characterized brain samples and associated clinical data from donors. If even 1% of Americans with and without brain disorders would donate their brains to research after death, this would revolutionize progress toward diagnosing, preventing, and curing brain disease as we know it.

To learn more about brain tissue donation and how to become a donor, please visit the NeuroBioBank website.


About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.