Frequently Asked Questions

» What is the Purpose of Brain donation?
Critical basic research is lagging behind because of the scarcity of brain tissue for Williams syndrome research. So far, researchers have documented irregularities in several brain areas. The next step is a comprehensive, comparative investigation of brain areas and brain development with the new techniques now available. Without this tissue, studies that could lead to the understanding of Williams syndrome cannot be done.

With brain tissue, scientists can go far beyond the limits of other technologies and study Williams syndrome at a cellular and molecular level. It is possible to study the pathways of the brain to help understand both normal and abnormal development. What is learned about neurodevelopment can be applied to day-to-day educational programs to make the most of developmental periods and the brains capacity to change. What is learned about cells and neurotransmitters in the brain can lead to new treatments.

In research supported by the National Institute of Child and Human Development, the Salk Institute’s Laboratory for Cognitive Neuroscience, in conjunction with the University of California, San Diego and the University of Utah Brain Institute, are conducting in-depth studies of the relationships between genes, brain structure and function, and behavior in Williams syndrome. Part of this research involves studying differences in cell size, shape, and functioning using donated brain tissue. This type of research has been instrumental in making new discoveries about a wide variety of conditions, including Huntington’s disease and Parkinson’s disease, and similar promise holds for individuals with Williams syndrome.

» What are the fees associated with brain donation?
There is NO costs to the donor or the donor’s family.

» Who can Donate?
Becoming a registered brain donor is easy. Any person 18 years of age or older who is their own guardian can simply complete and fill out and submit the “Brain Donation Registration” form. In the cases of children or individual’s with a guardian, that guardian can also fill out the form, though we strongly urge guardians to discuss the issue with the prospective donor to learn of their views and wishes. Family members/guardians can donate on the individual’s behalf post mortem.

» Are there any restrictions?
No.

» WHY IT IS IMPORTANT TO DISCUSS DONATION WITH YOUR FAMILY
We know that the decision even to consider becoming a donor or arranging for the donation of your family member’s brain tissue upon death can raise profound questions of life and death, body and spirit. We urge you to talk with your family, clergy and physician. Your family must be aware of your decision. Any medical treatments your physician directs will be unaffected by your decision to donate brain tissue.

» When is the right time to discuss donation
Although is a very difficult subject to face, brain donation is one that should be considered well in advance of any tragedy. Time is of the essence in organ donation, which must be completed within hours of death. At the time of such an unfortunate occurrence, emotions and thoughts are understandably directed elsewhere, which is why thinking about brain donation ahead of time is important.

Also it is important if the family discuss the idea of donation openly to avoid misunderstandings and to facilitate the donation process. Following the donor's death, the legal next-of-kin must verify the donor's intent-to-donate and must provide us with the documentation to procedure with the arrangements for donation.

» Compassion and Dignity
Virtually every religion encourages us to have compassion and to act to help others. Tissue donation may be, for you, one of the ways to help future generations. A pathologist or neuropathologist performs the procedure and coordinates with the funeral director. Your loved one is treated with the same respect and dignity that would be given any patient and the procedures used to obtain brain tissue will not affect any funeral arrangements, including viewing, that you wish to make.

» Please Ask Questions
Please ask questions. Our team is here to provide you will the must accurate information regarding this sensitive matter. All inquiries are treated with the utmost respect and complete confidentiality. You may reach us by phone, fax or email. Whatever means is most convenient for you. tel: 800.434.1038, fax: 858.452.7052 or email: lcnwilliams@salk.edu

» What happens in the case of an emergency?
In the tragic event of a sudden death, please contact us at 800.434.1038 for assistance. This is not a voicemail, instead, answered by a live person who will contact a member of our team to assist with the tissue recovery at your area hospital. Even if you have not pre-registered donation can still be arranged, once you make this simple phone call

» Other considerations
Registering to donate brain tissue does not mean that we anticipate you or your child to die an early death. It does mean however, that you are prepared to act if such an unexpected and unfortunate event were to occur.

The identity of each donor will remain strictly confidential.

The donation process involves a careful surgical procedure in which the body is not disfigured in any way. This procedure does not interfere with any funeral or burial arrangements, including an open casket.

» International Visitors: The Williams Brain Donation Center is not currently able to arrange for brain collection outside of the United States. We will be happy to send you information regarding tissue donation that you can provide to your local physician or health care professional. They may be able to arrange for brain tissue recovery and storage and then call us to work out a plan of transfer of tissue.