Webinar: Why Brain Tissue Donation Matters
juin 24, 2022 @ 10:00 am – 11:00 am
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 will hear from families who have been through this, a world renowned researcher utilizing these precious donations to make breakthroughs and the director of the Tissu cérébral de Harvard Centre de ressources sur la façon dont tout cela fonctionne. Ce webinaire est organisé conjointement avec nos partenaires de Hope4Harper.
Our guests will be:
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 et est décédée à l'âge de 12 ans. Angie et sa famille ont pris la courageuse décision de faire don des organes et des tissus d'Amelia. Même maintenant, Amelia se bat pour trouver un remède.
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. – Professeur agrégé de psychiatrie, Harvard Medical School et directeur du Harvard Brain Tissue Resource Center/NIH NeuroBioBank qui non seulement dirige un centre de don de cerveau du NIH, mais a passé de nombreuses années à étudier le cerveau avec des dons de tissus.