In order to find the key to treating Tourette Syndrome, scientists must be able to fully understand the brain’s basic biochemistry. This can only be done by studying actual brain tissue. The critical question is — how do you go about getting brain tissue to study
A Shortage of Brain Tissue to Study:
Since the discussion of organ donation can be a sensitive subject, it is no surprise that brain tissue is in short supply for research. This critical shortage of brain tissue slows scientific inquiry, and hinders progress in understanding the physiological basis of Tourette Syndrome.
You Can Help:
By registering your intent to donate brain tissue you will ultimately help provide samples that researchers need to pursue promising studies. Registering as a donor does not, in any way, affect the medical treatment you receive.
Because the majority of brain pathology studies are carried out on a very small piece of tissue, each donated brain provides an invaluable amount of material that can be distributed among many different researchers.
To support the great progress being made in Tourette research, the Tourette Association is asking its constituents and family members to consider organ donation. Working together with the Harvard Brain Tissue Resources Center, we hope to advance research and improve the lives of children and adults with Tourette and Tic Disorders everywhere.
Important Information & Instructions:
- Fill out the Brain Bank Donor Card and give the other card to your next-of-kin or the person you have designated to contact the Harvard Brain Tissue Resource Center.
- Inform your doctor of your intention to donate your brain tissue.
- If you live in a nursing home or other care facility, notify the administrator of your decision.
- Should you be hospitalized, be sure that your intention to donate your brain to science is noted on your hospital chart and inform your medical care team of your decision.
- The Brain Bank receives calls 24-hours a day. Appoint someone to call the Harvard Brain Tissue Resource Center (1-800-272-4622) when death is imminent or as soon as possible after death.
- Even if you are a registered donor with the TAA program, your next-of-kin will have to give permission for the tissue to be removed and provide authorization for the Harvard Brain Tissue Resource Center to acquire your medical records. The required consent forms will be provided to your next-of-kin by the Harvard Brain Tissue Resource Center when they are contacted.
- Once your next-of-kin has given permission for the brain to be removed, the Administrative Coordinator from the Harvard Brain Tissue Resource Center will make all of the necessary arrangements. The TAA will cover the pathologist fees for brain retrieval.
- Donations of organs and tissue other than the brain sometimes require being on a respirator for extended periods of time. Therefore, it is important that we are aware of the fact that the brain must be removed rapidly to avoid compromising the tissue. Unfortunately, this need to act quickly may preclude donations of some (but not all) tissue.
