ALS Brain Bank and Autopsy Program
The brain bank is a valuable resource that has enabled investigators to improve the scientific community's understanding of the neuropathology, genetics, biochemistry, cell biology and modeling of neurodegenerative disorders. By studying the blood and brain tissue of donors, Mayo Clinic investigators were among the first to discover mutations in the C9orf72 gene and use this information to develop mouse models. Researchers use these models to study basic disease mechanisms and develop therapeutic strategies for this most commonly known cause of amyotrophic lateral sclerosis (ALS).
Dennis W. Dickson, M.D., a professor of laboratory medicine and pathology, Mayo Clinic College of Medicine and Science, in Mayo Clinic's Department of Neuroscience in Florida, directs the brain bank for neurodegenerative disorders. He works closely with Bjorn E. Oskarsson, M.D., director of the ALS clinic.
Why enroll in a brain and spinal cord autopsy program?
One purpose of a brain and spinal cord autopsy is to provide family members with an accurate diagnosis, which may be difficult to do during life. The autopsy also includes information about the possibility of an inherited disorder that may affect other family members. Also, and perhaps most importantly, providing tissue samples helps researchers:
- Understand these diseases.
- Diagnose these diseases earlier and more accurately.
- Find treatments that slow the progression of, or cure, the disorder.
In Florida, Mayo Clinic facilitates a loved one's postmortem process for families that are enrolled in the brain and spinal cord autopsy program. If a person is registered in the brain and spinal cord autopsy program, there is no charge to the family for the postmortem examination.
Choosing the program
The process of deciding whether to undergo a brain and spinal cord autopsy is different for each family. Some families decide to participate because they have previously discussed similar issues, such as organ donation in general. Therefore, they are comfortable with the possibility. Others want to contribute to science or the research of a particular disease.
Some families find it harder to reach a decision. They may find it helpful to discuss the issues related to brain and spinal cord donation with a physician or another healthcare professional, support group members, or a member of the clergy. It can be consoling to know that a donation can provide valuable information to those who survive. An altruistic spirit by the person who donates leaves a legacy beyond measure. The results of studies such as this help further the quest for treatment and hopefully find a cure.
Whatever the decision, planning ahead gives families time to answer their questions, make an informed decision and put arrangements in place prior to loss. The program can't admit everyone, but it can accept most donations from patients with an ALS diagnosis who live in Florida and Georgia.