Williams Syndrome Tissue Donation Program
The Gift of Knowledge!

Current knowledge regarding Williams syndrome (WS) has been a gift to the scientific world by the generous donation of families’ participation in ongoing research studies.  By conducting cognitive and genetic testing, and brain imaging, researchers have been able to learn critical information about this unique syndrome, in the hope of providing families and the professional community with means of improving the lives of our loved ones with WS.

Another way of expanding our knowledge of the marvelous workings of our complicated brain is to do anatomical, neurochemical, and cellular studies, by looking at actual brain tissue.  Even with improved clinical research methods using genetic linkage, brain imaging such as PET and MRI, the investigation of post-mortem brain tissue is essential to increasing our understanding of how the nervous system functions.  Some examples of this type of research that has significantly expanded our scientific understanding has been in the treatment of Parkinson’s disease and the genetic testing for Huntington’s disease, neither of which would have been possible without directly working on the human brain.

Drs. Ursula Bellugi at the Salk Institute of Biological Studies and Katerina Semendeferi at the University of California, San Diego, in collaboration with Dr. Julie Korenberg at the University of Utah Brain Institute and colleagues, are conducting in-depth studies of the relationships between gene, brain, and behavior in Williams Syndrome, through anatomical and neurochemical research, by studying the actual cells in specific regions of the brain.

The delicate and highly sensitive issue regarding an individual’s decision to donate brain tissue is complex. However, donation of this kind is key, not just in our understanding of Williams Syndrome, but in understanding all of us.  In the words of Dr. Rodrigues at the NICHD Brain Bank,

"Each child is a treasure box, and when they pass away, they take with them the key that could unlock the mysteries of diseases. When parents decide to donate tissue to research, they are donating the key to that treasure for future generation. It is a way of sharing their child with all of humankind.”

Joining us on our journey is simple; tissue donation is supported by all major religions, and incurs no costs to families.  For additional information on joining a one of a kind research team studying Williams Syndrome, please contact us in the following ways:

In the tragic event of a sudden death, please contact us at (800.434.1038) for assistance. Even if you have not pre-registered donation can still be arranged, once you make this simple phone call. 

If you cannot reach us by phone, please contact us at our 24-hour pager (619.290.8677) and we will get back to you as soon as possible.

We encourage you to read through our website, ask many questions and consider the power of this gift of knowledge.

This research is funded by the
National Institute of Child and Human Development
conducted at:
The Salk Institute for Biological Studies
& University of California, San Diego