This is the recording of the “Why Brain Tissue Donation Matters” DEE-P webinar which was recorded on June 24, 2022

The loss of any loved one with a rare epilepsy is unimaginable. We all wish there were more we could do to help end the suffering that comes with a rare epilepsy diagnosis. In this webinar, we want to tell you about one incredibly important way families can make a huge impact – brain tissue donation.

We hear from families who have been through this, a world-renowned researcher utilizing these precious donations to make breakthroughs, and the director of the Tejido cerebral de Harvard Centro de recursos sobre cómo funciona todo esto. Este seminario web se lleva a cabo conjuntamente con nuestros socios de Hope4Harper.

Nuestros invitados fueron:

Penny Howard – mom to Harper, who had CDKL5 Deficiency Disorder (CDD) and bravely gave her brain to help study how to help those with CDD who come after her. Penny is also the Founder and Director of the Hope 4 Harper, a non-profit working to provide hope to those living with CDD and other related diseases.

Angie Weaver – Angie is Director of a nonprofit in Northern Minnesota, a passionate advocate and Warrior Mom to Amelia, who had SCN2A y falleció a los 12 años. Angie y su familia tomaron la valiente decisión de donar los órganos y tejidos de Amelia, por lo que incluso ahora Amelia sigue luchando por una cura.

Frances Elizabeth Jensen, MD, FACP – among many other things, is the Chair of the Department of Neurology at the Perelman School of Medicine, University of Pennsylvania and Co-Director of the Penn Medicine Translational Neuroscience Center. Dr. Jensen has researched the brain extensively and uses donated brain tissue to make breakthroughs in our understanding of disease and potential pathways to better treatments.

Sabina Berretta, MD. – Profesor asociado de psiquiatría, Facultad de Medicina de Harvard y Director del Centro de Recursos de Tejido Cerebral de Harvard/NIH NeuroBioBank que no sólo dirige un centro de donación de cerebros de los NIH sino que también ha pasado muchos años estudiando el cerebro con tejido donado.

Para obtener más recursos del DEE, consulte nuestro centro de Recursos