University of Texas, UTSW, Dallas, Texas
What causes essential tremor is currently a question with no known answer. Brain donations (also called postmortem examination or autopsy) are the only way to find the answers to this question. With these answers, better treatments can be developed and a cure can be found.
Medical researchers at UT Southwestern University, with the help of the IETF, maintain a centralized brain bank to serve the ET community. This will enable doctors to begin to actively study what happens in the brains of people with ET. Unfortunately, there is a severe shortage of brain tissue donations from people who had ET during life.
Eligible donors will have been diagnosed with essential tremor by a physician, they would not have any other neurological diagnoses (e.g. Dystonia, torticollis, Parkinson’s disease), would be ages 70 and older, and had not had Deep Brain Stimulation surgery or any other surgical intervention to treat their tremor.
If you are interested in helping find the causes of ET and want to leave a medical legacy for future generations, please call 203.785.5301 or email firstname.lastname@example.org, and you will be sent an information packet on brain donation.
Brain Donor Project
The Brain Donor Project is a non-profit that supports the brain banks of the National Institutes of Health (NIH), the NeuroBioBank, to increase the supply of donated brain tissue for scientific research. There is no cost to the family to donate a brain to a NeuroBioBank site, nor to receive a copy of the donor’s neuropathology report, if requested. No age restrictions and very few limitations on eligibility are in place, but it is highly recommended to register in advance. Learn more.
The Brain Observatory – San Diego, California
The Brain Observatory’s brain bank in San Diego, California is now accepting brain donations from patients who have been diagnosed with Essential Tremor (ET). The effort is part of the institute’s Digital Brain Library project, a web-accessible digital archive of neurological data that will be open to worldwide collaboration. Potential brain donors may also participate in active ET research. By combining modern neuroimaging techniques and detailed behavioral testing with the eventual examination of the brain, researchers aim at obtaining a new and more comprehensive picture of ET.
Note: The program is currently enrolling only residents of San Diego county; however, potential participants from other areas will be signed into a registry that may be the basis for future larger studies.
For more details on the Digital Brain Library, visit their website.