Brain and Tissue Bank for Developmental Disorders
Families have the option of donating tissues from their deceased loved one. We understand that this is a very personal and sometimes difficult decision that will not be right for everyone. The Brain and Tissue Bank for Developmental Disorders at the University of Maryland in Baltimore supports research aimed at improving the understanding, care, and treatment of developmental disorders including Niemann-Pick Disease. The Brain and Tissue Bank is funded by the National Institute of Child Health and Human Development to serve as an intermediary between researchers who study rare diseases and people who wish to have tissue donated for research during surgery or upon the time of their death.
In addition, the Brain and Tissue Bank link above will take you to the family-focused portion of the Brain and Tissue Bank Web site where you will find family stories, including one from the parents of an NPC donor, registration materials and other useful information. If the donation will likely occur at time of death, optimally, contact to register and arrange the donation should be done prior to the individual’s death to insure that tissues are handled and stored properly.
Thank you for taking the time to consider the possibilities offered through the gift of tissue donation.
Updated 7/14/2009 CWV