“Brain Donations: Who, What, Where, When, and Why?” Webinar
Friday, March 17, 2023
Co-hosts: The Association for Frontotemporal Degeneration (AFTD) and the FTD Disorders Registry
The focus was on the crucial need for brain donations to advance the science of frontotemporal degeneration (FTD).
Brain Support Network’s Robin Riddle addressed how to navigate the process. How does a person donate their brain, and to whom? When is this decision best made?
Dr. David Irwin, a neurologist from the University of Pennsylvania, explained why the brain is such an important resource for FTD researchers. Another clinician, Dr. Lauren Massimo of the University of Pennsylvania, interviewed a spouse who had donated her husband’s brain to UPenn.
GOALS
The goals of this webinar were to:
- Understand how brain donations make strides toward new FTD treatments
- Recognize the importance of discussing brain donation early in the FTD journey
- Identify the options available for pursuing brain donation
- Learn the important steps in the brain donation process
PRESENTERS
David Irwin, MD, is the Principal Investigator (PI) of the Penn Digital Neuropathology Lab and an attending cognitive neurologist in the Penn Frontotemporal Degeneration Center. His research focuses on integrating histopathology and imaging methods in the human brain to develop and validate biomarkers based on gold-standard histopathology, with the overall goal of improving diagnosis to facilitate clinical trials for emerging therapies for FTD and associated neurodegenerative disorders.
Lauren Massimo, PhD, CRNP, is an Assistant Professor at the University of Pennsylvania in the School of Nursing and the School of Medicine, Frontotemporal Degeneration Center. She holds a bachelor’s degree in nursing, a master’s degree as an Adult and Gerontology Nurse Practitioner, and a doctorate degree all from the University of Pennsylvania. Dr. Massimo’s research program focuses on identifying the cognitive and neural basis for symptoms of neurodegenerative disease.
Robin Riddle is CEO of Brain Support Network (BSN), a nonprofit organization focused on helping families make arrangements for brain donation to support neurological research. BSN has helped over 1,200 families donate a loved one’s brain to support research in all types of FTD (including FTDbv, PPA, PSP, and CBD), Alzheimer’s, Parkinson’s, Lewy body dementia, etc. Only half of the diagnoses given during life are confirmed through brain donation.
RECORDING
Ms. Riddle’s presentation was pre-recorded and is available on Brain Support Network’s YouTube channel. All presentations were recorded and are available on the Registry’s YouTube channel.
CO-HOSTS
This presentation is part of the Perspectives in Research Webinar Series co-hosted by the Association for Frontotemporal Degeneration and the FTD Disorders Registry. This Perspectives in Research Webinar is made possible through the generous support of Alector.
RESOURCES AND HANDOUTS
- Read about Brain Support Network’s approach to brain donation.
- As a starting point, please complete Brain Support Network’s “Soon” form. We look forward to helping you with brain donation, whether you or your family member has an FTD diagnosis or something else.