We welcome donations of tissue and DNA from cases of epilepsy-related mortality.  Although possible and probable SUDEP is a primary focus, we accept tissue donations from epilepsy patients who have passed from other causes as well. Please call 855-432-8555 (toll-free) and you will be connected to one of the NASR staff members during business hours. If it is after-hours or if there is a problem getting through, you will be put through to the cell phone of Drs. Orrin Devinsky or Daniel Friedman, or Program Manager, Juliana Laze.  They can also be reached by email at: od4@nyu.edu, daniel.friedman@nyumc.org, and juliana.laze@nyumc.org, respectively.  If for any reason you are unable to reach a NASR representative and time is important for a brain tissue donation, we collaborate with the NYU Alzheimer's Disease Center Brain Donation program, and they can be paged at 917-321-6424.  They can facilitate the donation of brain tissue to their site.

NASR will help coordinate the donation process and speak with the Medical Examiner, Coroner, or Pathologist about the process to donate brain tissue and/or DNA. They will contact the next-of-kin and obtain consent for the IRB-approved study and then send the consent form to you for your records. They will also work with other members of the NASR team to provide information on shipping as well as billing for any costs related to your services.

If -80C is not available: whole brains shipped after formalin fixation for 2 weeks. Brains should be suspended in formalin (ie floating in formalin, not left flat on bottom of container). It is better to ship after two-week fixation as the brain is much less likely to be injured by shipping.

If -80C is available:

  • For brains with PMI 72 – 96 hrs: Cut ~50gm pieces from frontal pole, temporal pole and occipital pole on one side. Label and freeze -80C, ship next day on dry ice (ideally 10 lbs). The remainder of the brain should be fixed in formalin as above.
  • For brains with PMI <72hrs: Cut brain including cerebellum but excluding brain stem.  One 1/2 should be frozen (see below) fresh. One 1/2 is formalin fixed for two weeks and shipped after 2 weeks.  Cut the brainstem at the midbrain-diencephalic junction and freeze each section.  The fresh cerebral hemisphere is cut from frontal pole to occipital pole in ~2cm coronal slabs that are placed in labeled individual ziplock bags. The brainstem is similarly cut in labeled ~2 cm transverse slabs and placed in ziplock bags. Place at -80C and ship next day on dry ice (ideally 10 lbs).

For families that want only part of brain donated. Cut ~50gm pieces from frontal pole, temporal pole and occipital pole on one side. Cut brainstem at the superior midbrain and include all of brain stem if possible. If -80C is available, all tissue can be frozen. If -80C is not available, all tissue can be fixed in formalin.