Post mortem organ donation is a sensitive, personal decision and not something that everyone may be comfortable with. Decisions made about donations are often best made by each person for themselves and when the time is not imminent.
Stanford University 's Center for Narcolepsy (CFN), a world leader in narcolepsy research, has published over 100 articles on narcolepsy. The Stanford group was the first to report that narcolepsy-cataplexy is caused by hypocretin abnormalities in both animal models and humans. The CFN established a brain donation program in 1999 with a goal to understand the process by which hypocretin producing cells are destroyed and to find a way to prevent and reverse it.
Stanford's Center for Narcolepsy offers a program to patients with narcolepsy (and unaffected family members or spouses) where they can donate his/her brain to research upon death. Through the brain donor program, our research group will examine brain tissue in light of the current research/knowledge on narcolepsy. From our recent studies, we have determined that >90% of narcolepsy with cataplexy is caused by a lack of a brain chemical called hypocretin. This chemical is involved in the alerting process of the sleep/wake cycle. We are still in the process of determining the cause of narcolepsy without cataplexy and most familial cases of narcolepsy. The only way to learn unequivocally the causes of all cases of narcolepsy is through examination of brain tissue. Thus, examination of the brain tissue allows our center to perform studies aimed toward furthering our understanding of narcolepsy. This enables both researchers and family members to gain a more thorough understanding of the cause of narcolepsy.
The brain donation itself takes very little time, does not interfere with the family's funeral plans and will not add to the cost of funeral arrangements. If brain donation is something that you may consider, please visit the CFN web site http://med.stanford.edu/school/Psychiatry/narcolepsy/ for more information or to request a donation packet.