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 Harvard Brain Tissue Resource Center about how this all works. This webinar is being held jointly with our partners at Hope4Harper.

Our guests were:

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 and passed away at age 12. Angie and her family made the brave decision to donate Amelia’s organs and tissue, so even now Amelia is fighting on for a cure.

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, M.D. – Associate Professor of Psychiatry, Harvard Medical School and Director of the Harvard Brain Tissue Resource Center/NIH NeuroBioBank who not only runs an NIH brain donation center but has spent many years studying the brain with donated tissue.

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