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 as "control" brains. So please encourage your family members and friends to also pre-enroll as donors.

If I sign up to be a brain donor, does that preclude me from donating other organs for transplant purposes?
It may, depending on how long the procedure takes for retrieving the donated organs and how long the donor was on a respirator.

Does the Brain Tissue Resource Center accept whole body donations?
No, the Harvard Brain Tissue Resource Center 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 Massachusetts in order to register there as a tissue donor?
No. You can live in any part of the United States.  The Harvard Brain Tissue Resource Center works in conjunction with pathologists and funeral homes throughout the United States, and they communicate with those specialists, who are the ones who actually collect the brain. It is very important that the Harvard Brain Tissue Resource Center 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 Brain Tissue Resource Center 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 DMRF 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.

Is the donor's body transported to the HBTRC for brain removal?
No. The HBTRC will coordinate the brain recovery with a local pathologist in the donor's area. The pathologist will discreetly remove the entire brain and then transport it to the HBTRC. The body remains in the donor's local area.

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 enroll 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.

Who do I contact for more information?
The DMRF works in partnership with the Harvard Brain Tissue Resource Center at McLean Hospital in Belmont, Massachusetts to assist people interested in pre-enrolling as brain donors. The first step to becoming a brain donor is to request additional information from the DMRF by 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.

Your donor information remains confidential, and you have the right to withdraw from the program at any time.

For urgent matters related to brain tissue donation, contact the Harvard Brain Tissue Resource Center directly at 1-800-BRAIN BANK or 1-800-272-4622, website http://www.brainbank.mclean.org/, or e-mail of hbtrc@mclean.harvard.edu

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