November 11, 2020

Brain Donation

  • The University of Michigan Brain Bank was founded by Professor Anne B. Young and Professor J. Penney to collect, store and distribute post-mortem brain tissues and associated clinical history. Established in 1982, the Michigan Brain Bank, in partnership with the Michigan Alzheimer’s Disease Research Center (MADRC), now has approximately 1500 paraffin and 1100 frozen brains. The program currently has 560 registered living clinical research participants who have consented to donate after death. 

    The Michigan Brain Bank has contributed to studies of many brain diseases, including studies of Alzheimer disease, Ataxia, Parkinson’s disease, Huntington disease, ALS, and psychiatric diseases.  Active research programs include studies of Alzheimer disease and related dementias, Multiple Systems Atrophy, Parkinson’s disease and bipolar disorder.   

    The Brain Autopsy and Donation Program provides individuals and families with an opportunity to contribute to research. With the hope of developing pharmaceutical treatments and finding cures, the Brain Bank is committed to providing the scientific community with the brain tissues necessary to investigate the progression of neurological disease. Scientists around the world contact the Michigan Brain Bank to access tissue and information. The Michigan Brain Bank carefully screens all proposals and only approves legitimate requests. The Brain Bank adheres to all applicable regulations and guidelines when procuring, storing and distributing brain tissue. Appropriate consent is always obtained and donor anonymity is maintained. 

    More information can be found on the Michigan Brain Bank website here.

  • Image above: Donated brains are analyzed at our quarterly Clinical-Pathological Correlation Conferences in order to teach young clinicians and investigators about the complexity of diagnosing dementias.

    There are over 13 million Americans living with a brain disease or disorder. To find treatments and cures, researchers must study the human brain. The Michigan Brain Bank provides individuals and families an opportunity to contribute to this research effort.

    Donated brains are collected and stored by the Michigan Brain Bank to help scientists around the world advance the understanding of brain disease and disorders. You can make a difference and help future generations by generously donating your brain to the Michigan Brain Bank.

    There are no costs to donors or their families for autopsy and donation when participants meet our eligibility requirements.

    Medical clarity for the family

    Brain autopsy, or examining the brain after death, has many benefits. For families, learning the precise cause of the patient’s illness may be a tremendous relief and help to ease uncertainty and doubt. It gives relatives accurate information about the cause of symptoms and confirms or modifies the diagnosis made during life. Autopsy provides relatives with accurate information about their family’s medical history needed for their care and for future generations.

    Opportunity to contribute to the understanding of disease mechanisms and ongoing research

    Results of a brain autopsy is becoming increasingly important as we learn more about Alzheimer’s disease, Parkinson disease, Multiple Systems Atrophy, other neurodegenerative and psychiatric disorders. It is likely in the future to affect treatment recommendations for family members. Additionally, when an autopsy is done, brain tissue is stored and may be available for additional studies even many years later.

    Brain autopsies are an extremely important source of information about how the disease affects the anatomy of the brain. This information is used to direct future research into the causes of memory loss, their progression over time, and clues about effective treatment approaches. For example, researchers recently have found that a previously unrecognized abnormality in brains of patients with dementia called Lewy bodies may be present in 40% of persons with Alzheimer’s disease and may account for some symptoms. We would never have learned this unless we conducted autopsies in addition to our clinical care. What we know about neurodegenerative disorders has only been possible because of the commitment of patients and families like you. Even if individual family members do not benefit directly from a brain autopsy, it can lead to a better understanding of neurodegenerative and psychiatric disorders for future generations and provide an important measure to assess public health and quality of care.

    Be sure to register in advance

    For most people, the time immediately following the death of a family member is very difficult. It is not a good time for making important decisions such as this. It is best to make the decision about whether or not to enroll for brain autopsy and donation well in advance, with less stress and with consideration for the wishes of the patient and family. As a result, we encourage you to get in touch with our Michigan Brain Bank Coordinator to discuss the process, and review the forms and documentation needed to participate, well in advance. We are happy to answer any questions you may have.

    More information and how to register

    To learn more about the brain donation program, please contact Michigan Brain Bank Coordinator, Matthew Perkins, at perkmd@med.umich.edu or 734-647-7648. Matthew is more than happy to discuss the process, work with your care provider, and align with your funeral arrangements. Please do not hesitate to get in touch.

    Participation in the program requires eligibility and documentation. Please review some of the below forms to get started.

    For donation requirements and collection information, please view this form.

    For more information on the autopsy program, please view this packet.

    More information can also be found on the Michigan Brain Bank website here.

  • Image above: David with his wife at the Alzheimer’s Association Walk to End Alzheimer’s.

    “This was something important to our dad, hence, very important to us that we help make it happen, as he wished,” Bonnie shares with Matthew Perkins, Michigan Brain Bank Coordinator. Bonnie’s father, David, passed just last year, but had signed up for the brain donation program some 15 years earlier at the onset of his journey with what he and his family thought was Alzheimer’s disease.

    “Our grandmother lived a long, agonizing journey with Alzheimer’s disease for nearly 20 years. Our mother also struggled with memory loss, though it was never diagnosed. So Dad really wanted to help and signed up for the autopsy program and research studies early on when he was diagnosed at the University of Michigan. Our parents were very involved in advocacy and volunteer efforts for the disease, so it was not shocking that he signed up for the brain donation. Though at times, knowing Dad, we would guess that he did it for us kids also.”

    This kind of story is common. Many reasons may lead someone to volunteer for brain donation, including family ties, giving knowledge to future generations, a hope to contribute to something bigger than ourselves, and supporting children and their health through the knowledge gained by autopsy.

    As mentioned, David was diagnosed with Alzheimer’s disease here at the University of Michigan. His mother-in-law was also diagnosed with Alzheimer’s disease at Rush University in Chicago. Their journeys with the disease were very different. While David remained very physically active for most of the disease and faced challenges with his speech as the disease progressed, his mother-in-law faced mood changes, immobility, and challenges feeding herself. The journey with dementia varies from person to person, and symptoms are often diverse.

    This diversity in the manifestation of the disease often stumps even the most knowledgeable of physicians. Although David lived for nearly 15 years with a diagnosis of Alzheimer’s disease, at his autopsy his children learned that he was in fact living with a similar but distinctly different disorder called Primary Age-Related Tauopathy (or PART). PART manifests similarly to Alzheimer’s disease in the clinic, however, pathologically the brain only shows signs of neurofibrillary tau tangles. The other pathological hallmark of Alzheimer’s disease, beta amyloid plaques, are missing. At this time, PART is impossible to detect in the clinic and can only be diagnosed through brain autopsy.

    There is still so much research that needs to be done and knowledge to be gained so that patients and their families can receive accurate diagnoses. “I just want to understand,” Bonnie shared as she describes her thirst for knowledge when it comes to her father’s health and the health of her entire family line as it relates to dementia.

    The brain donation program here at our Center, in partnership with the Michigan Brain Bank, offers an outlet for patients and their families to contribute to future knowledge while also receiving concrete answers to their family member’s medical condition. This program ships samples as small as five microns thick across the country, so one donation can impact hundreds of research studies. Donations are also stored safely at -80 degrees Celsius at the Michigan Brain Bank so these donations are accessible for years to come. Family members of those who participate in the brain donation program also receive a complete report following the autopsy so that they can understand the full scope of their family member’s disease, and how it could relate to their own health.

    Participating in a program such as brain donation is a big, and sometimes uncomfortable decision for family members to face. To provide comfort and assistance throughout the entire process, family members and patients are able to contact Matthew Perkins, Coordinator of the Michigan Brain Bank, with any and all questions. Matthew himself arranges all the paperwork, communicates with families, and performs the autopsies, so it is often comforting that he knows all volunteers by name.

    David passed almost a year ago, and Bonnie can still describe the feelings she felt when she received a call from Center Director, Dr. Hank Paulson on the morning of her father’s autopsy. “He was so kind, and expressed his deep gratitude for our father’s donation. He and Matthew truly made this journey easier.”

    If you or a family member are interested in participating in the brain donation program, we would love to hear from you and answer your questions. Please contact Matthew Perkins, Michigan Brain Bank Coordinator at perkmd@med.umich.edu or 734-647-7648.