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 بافت مغز هاروارد مرکز منابع در مورد نحوه کار این همه. این وبینار به طور مشترک با شرکای ما در Hope4Harper برگزار می شود.

مهمانان ما عبارت بودند از:

پنی هاوارد – 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 و در سن 12 سالگی درگذشت. انجی و خانواده اش تصمیم شجاعانه ای گرفتند که اندام ها و بافت آملیا را اهدا کنند، بنابراین حتی در حال حاضر آملیا برای درمان مبارزه می کند.

فرانسیس الیزابت جنسن، 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.

سابینا برتا، MD. – دانشیار روانپزشکی، دانشکده پزشکی هاروارد و مدیر مرکز منابع بافت مغز هاروارد/NIH NeuroBioBank که نه تنها یک مرکز اهدای مغز NIH را اداره می‌کند، بلکه سال‌های زیادی را صرف مطالعه مغز با بافت اهدایی کرده است.

برای منابع بیشتر DEE، ما را بررسی کنید مرکز منابع