Commonly Asked Questions
Do you only need brain donations from dystonia-affected individuals?
No. In fact, we need brain donations from persons who have dystonia and those who do not. The latter are used for comparison purposes and are referred to a “control” brains. So please encourage your family members and friends to also register as donors.
If I sign up to be a brain donor, does that preclude me from donating other organs for transplant purposes?
No. The good news is that you are able to do both. If you need guidance as to where you can sign up to be an organ transplant donor, the Brain and Tissue Bank at the University of Maryland can provide you with resources to contact.
Does the Brain and Tissue Bank accept whole body donations?
The Brain and Tissue Bank is not equipped to accept "whole body" donations and, usually, most facilities that do accept whole body donations will not allow for the removal of brain tissue for research purposes. They want the body to be intact. So that means that individuals must decide whether they would like to donate their brain and help to advance dystonia research, or donate their entire body to science.
Do I need to live near the state of Maryland in order to register there as a tissue donor?
No. You can live in any part of the United States or Canada. The Brain and Tissue Bank in Maryland works in conjunction with pathologists and funeral homes throughout the United States and Canada, and they communicate with those specialists, who are the ones who actually collect the brain. It is very important that the Brain and Tissue Bank is notified as soon as possible when death is imminent or has just occurred.They are available to accept these emergency calls 24 hours a day, 7 days a week, 365 days a year. The brain must be recovered within the first 24 hours and, preferably, within the first 8 hours, or it will not be of value to researchers. It will be transported to the University of Maryland at a later date, preserved and stored, and made available for analysis by interested researchers.
Is there any cost involved to participate as a donor?
No. The Brain and Tissue Bank assumes any and all costs, so there is no expense to the family.
Will being a brain donor interfere with funeral arrangements or memorial services in any way?
Absolutely not. You may have any sort of service or remembrance that you and your family desire. The brain recovery is done discreetly and does not cause any disruption in those plans, or cause any change in the donor's outward appearance.
If someone has had the deep brain stimulation (DBS) surgery or another type of brain surgery, does that prevent them from becoming a brain donor?
No. Those having had brain surgery can still register as donors.
Is there anything that could preclude someone from becoming a donor?
Yes. We regret that if a person tests positive for HIV or for hepatitis he/she cannot be a brain donor. Additional circumstances may also preclude someone from becoming a brain donor. If you have questions, feel free to contact the Brain and Tissue Bank directly.
Who do I contact for more information?
The DMRF works in partnership with the NICHD Brain & Tissue Bank at the University of Maryland to assist people interested in registering as brain donors. The first step to becoming a brain donor is to request additional information from the DMRFby phoning 800-377-3978 or emailing brainbank@dystonia-foundation.org Be sure to provide your full name, postal mailing address, phone number(s) where you can be reached, and your email address if you have one so that we can provide you with information and more easily communicate with you.
You may also contact the Brain & Tissue Bank directly at 800-847-1539 or 410-706-1755; and btbumab@umaryland.edu When you contact them, please let them know that you are affiliated with the DMRF and ask that they notify our organization of your interest in the brain donor program.
Your donor information remains confidential, and you have the right to withdraw from the program at any time.
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