The following information about donating a brain for research was compiled by Cori Robin, LCSW, former social worker with the HDSA Center of Excellence at Rush Medical Center, Chicago,Illinois.
An immense amount of research is being done on brain tissue in order to understand more about Huntington's disease. Brain banks collect brains from donors and distribute tissue to researchers trying to understand causes of diseases. The goal of this research is to understand how the mutated gene can, over a period of many decades, cause malfunction and death of neurons in certain parts of the brain.There is a critical need for brain tissue from individuals affected by Huntington's disease at all stages as well as from those without HD. Brain donation is a gift of hope for generations to come. Please discuss this important issue with your family as this, of course, is a very personal decision. A few options:
1. Rush Brain Bank
: Donations packets can be obtained from the HDSA Center of Excellence at Rush University Medical center 312-563-2900. ***PLEASE NOTE***Rush Medical Center only accepts brain donations from those patients whose brain has been removed at Rush Medical Center and only from those patients who have received medical care at Rush Medical Center. Click here for more information about brain donations at Rush Medical Center.
Rush Brain Donation Research Center By Tracy Waliczek
As a part of our mission here at Rush University Medical Center, we are committed to continued research in the area of Movement Disorders. An important part of our research in- volves examining the actual brain tissue of patients affected with these conditions, including HD. The decision to donate your brain to advance HD research is an entirely personal one and should include discussions with your loved ones. To request information, please feel free to contact Tracy Waliczek, brain donation coordinator, at Tracy_Waliczek@rush.edu
(email preferred) or 312-563-2848.
*Will I be able to have an open casket?
Yes. It is possible to donate your brain in a way that allows for an open casket funeral.
*What will happen with my brain once donated?
A qualified neuropathologist will take small tissues samples which allow for research on how HD affects the human brain. One brain donation can allow for hundreds of tissue samples.
*Is being an organ donor on my driver’s license sufficient for brain donation?
No. Organ donation on ID cards and driver’s licenses allow for donation for transplant purposes but does not include organ donation for medical research.
*What if I change my mind and no longer wish to donate?
You are able to change your mind at anytime.
2. Massachusetts General Hospital
: brain tissue for research may be donated to an HDSA supported brain bank through MGH. The 24-hour contact number is 617-724-5700 and page #21300 or for general information, call 617-724-2227.
How to Make A Donation
Call 1-800-Brain Bank and Request a Brochure
DONATION OPTIONS AND ELIGIBILITY
For comparative neurobiological investigations brain tissue is being collected from:
• normal individuals with no neurological or neuropsychiatric disorders
• individuals diagnosed with a neurobiological disorder
• individuals diagnosed with schizophrenia or manic depressive illness
• parents, siblings and offspring of individuals diagnosed with schizophrenia or manic depressive illness
• individuals who have no blood-line familial diagnosis with a neurobiological disorder.
Becoming a prospective tissue donor is easy. Any person 18 years of age or older can simply complete the "Brain Donation Registration" and send it off to the Brain Bank. The next most important thing to do after signing up is to inform your family that you are pre-registered for brain donation at the Harvard Brain Tissue Resource Center. Often a brain donation is a last minute decision on the part of the family. Generally, however, it is better if the family has already openly discussed the idea of donation in order to avoid misunderstandings and to facilitate the donation process. At the time of death of the donor, the surviving family members will need to be available to verify the donor's intent-to-donate, and to offer authorization to the Brain Bank to acquire all medical records. At the time of death, an individual's body becomes the property of the spouse, or if there is no spouse, then the adult children or parent. Although an individual can make a personal request to donate his/her brain, ultimately it is the surviving family members who have the privilege and responsibility of deciding whether this unique and valuable gift will be made.
Frequently asked questions about brain donation
Q: Can you have an open casket funeral if you donate your brain?
A: Yes. Brain removal does not cause disfigurement and does not interfere with funeral arrangements or viewing of the deceased. This is a common procedure and the incisions are fully compatible with currently accepted procedures used by funeral directors and morticians.
Q: Is brain tissue donation the same as other organ donation?
A: Not exactly. When someone dies, the brain tissue needs to be donated within 12 hours for it to be useful to researchers. The brain can’t be kept alive with machines the way the heart can for donation. And brain tissue isn’t used for a transplant like the heart or kidney – its tissue is for research only.
Q: I am identified as an organ donor on my driver’s license. Is this sufficient to ensure that my brain will be donated for research?
A: No. Organ donation preference status on an ID card is about donating organs for transplant, not for medical science.
You will need to register with the New York Brain Bank if you wish your brain tissue to be donated for this research. Note: These FAQ's were taken from Predict-HD website: https://www.predict-hd.net/content/brain-donation More questions? Please contact the New York Brain Bank at 1-212-305-5779 or email email@example.com
the Harvard brain donation bank
web address is http://www.brainbank.mclean.org
The Brain Donor Project
One out of every six people is suffering from a devastating neurological disorder or disease. That’s why brain donation is critically needed. Diagnoses of autism and dementia is rising at an alarming rate, addiction is crushing families and mental illness can be devastating. Since the chances of developing a brain disorder increase with age—and Americans are now living longer than ever—the number of people in our population with disorders will rise significantly. Brain donation will help increase the availability of brain tissue for study to find answers & treatments for these diseases. For more information about The Brain Donor Project, click here.