Dr. Deborah Mash is a professor of neurology and molecular/cellular pharmacology at the University of Miami School of Medicine. She’s also the director of the university’s Brain Endowment Bank, and she recently spoke with PatientsLikeMe about her research and exactly what goes into donating your brain to science. As she says, “we still know very little about that which makes us uniquely human” – read her Q&A interview below.
What led you to study diseases of the brain?
The brain is the next biologic frontier. We have learned more about the human brain in the past twenty years than throughout all of human history. And, we still know very little about that which makes us uniquely human – our brain. I was always very interested in the anatomy and the chemistry of the brain and in disease-related Neuroscience. I consider it a privilege to study the human brain in health and disease.
How would you explain the process of brain donation to PatientsLikeMe members who might be new or uncomfortable with the idea of donating this organ to science?
Brain donation is no different than donating other organs after death. Organ and tissue donations can give life or sight to another person. Transplanted tissues are used in surgeries to repair damaged bones and joints. And these donated tissues are also important for research studies to advance best practices that are used by doctors. The gift of a brain donation supports research studies that will bring about new treatments, better diagnosis and ultimately cures for disorders of the human brain like Alzheimer’s disease, Autism, ALS, schizophrenia and depression, drug and alcohol addiction, bipolar disorder, and multiple sclerosis to name a few.
A brain donation does not interfere or delay a family’s plans for the funeral, burial or cremation. There is no cost to the family to make this final gift.
What brain bank research would you most like to share with the PatientsLikeMe community? Our ALS, MS, Parkinson’s and mental health members might be interested to hear about brain bank research for their conditions.
Studies of the human brain have led to seminal discoveries including the loss of dopamine neurons in Parkinson’s disease and the association of beta amyloid with Alzheimer’s disease. Without examining the human brain after death, these discoveries could not have happened. Medications for Parkinson’s disease were advanced because scientists identified the loss of dopamine that causes many of the symptoms.
We have new technology that provides an unprecedented opportunity to rapidly examine large-scale gene expression of human brain for the first time. This powerful approach can facilitate understanding the molecular pathogenesis of Amyotrophic lateral sclerosis (ALS), a disease that is usually fatal in five years. Motor neurons in ALS undergo degeneration, causing secondary muscle atrophy and weakness. Studies of ALS in human brain are beginning to identify multiple processes involved in the pathogenesis of ALS.
We have yet to fully understand the progression of multiple sclerosis (MS).
This disease is different for everyone who has it. The symptoms it causes and when they flare up is different not only between people but also throughout one person’s life. This makes the diagnosis difficult and complicates treatment. The science behind MS is slowed because there are too few brains donated for research. We get many more requests for well-characterized MS cases and too few brain specimens are available to support the research. This lack of donated brains from MS patients is a barrier for MS research.
Examining the brain after death is important to understand how well experimental treatments are working in clinical trials to see if the drug did what it was supposed to do. An autopsy follow-up on 13 patients from a recent Alzheimer’s drug trial showed that although the drug had cleared the beta amyloid protein, it hadn’t changed the course of the disease — an incredibly important observation needed to advance the direction of Alzheimer’s disease research. The same is true for anyone who participates in clinical trials for any brain disorder.
When you ask people (or their family members) to consider donating their brain to UMBEB or another brain bank, what do you want them to know?
A brain donation is a final gift that contributes to the health and well being of the next generation – your children and grandchildren. It is a very special endowment that lives on by advancing research that can lead to the next scientific breakthrough.
People who want to be organ donors typically sign a card letting others know their wishes, but brain donations require an additional pledge card. This is not always well promoted. How can PatientsLikeMe members who are interested in brain donation obtain the special brain donation pledge cards?
It is important to make your wish known by registering in advance. We make it an easy process and provide donor registration cards for your wallet. You can share this information with your family and friends. You can request information or become a registered donor by visiting us online at http://brainbank.med.miami.edu or call 1-800-UM-Brain.
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Are you testing all brains for presence of mercury, and other heavy metals and toxins? Mercury is especially neurotoxic, and there are common but hidden exposures from dental amalgam (especially for people with genetic variants who do not methylate well), fish, and other exposures. There is a growing body of research linking mercury with such diseases, and growing patient reports of recovery (in whole or in part) from diseases ranging from fibromyalgia to multiple sclerosis, memory loss, and mood disorders. Rather than simply diagnose and treat disease symptoms, we need to understand the variety of causative factors, remediate them to restore health, and use this knowledge to focus on prevention as well.