Our Progressive Supranuclear Palsy / Corticobasal Degeneration Symposium featured eight main speakers -- Stanford's Dr. Sharon Sha and Dr. Jocelyn Jiao, Kaiser speech therapist Stevy Shadwick, UCSF physical therapists Dr. Alexander Dien and Dr. Lucy Lotz, and Brain Support Network’s Robin Riddle. There was a panel moderated by Brain Support Network volunteer Astrid Fann, including two active PSP caregivers, one former PSP caregiver, a person with CBD, and a person with PSP.
The symposium was recorded. And two or three writers with Stanford Parkinson's Community Outreach are writing up their notes from the various presentations! See the agenda.
Below, you will find:
- slides from all speakers
- recordings of the presentations (including questions-and-answers) and the panel
- notes from event (as they are completed)
- PSP resources
- CBD resources
- researchers studying PSP or CBS/CBD at Stanford and UCSF
- PSP/CBD quiz
The co-hosts -- Brain Support Network and Stanford's Movement Disorders Center -- thank the generosity of those who made the symposium possible: our sponsor CurePSP, speakers, and panelists. We also thank those who purchased "scholarship" tickets so that people in the PSP/CBD community with a financial need could attend.
Please help make our next event possible by donating today to Brain Support Network.
COGNITIVE SYMPTOMS OVERVIEW
Sharon Sha, MD
Chief, Memory Disorders Center, Stanford
Video of Q&A. The speaker has asked that we not share the recording of her talk due to patient confidentiality. (We may re-record.)
Notes - coming soon!
PSP/CBD PANEL
Moderated by Astrid Fann
Co-Leader, Brain Support Network's PSP/CBD Caregiver Group
Panelists (L to R): Astrid (moderator, former PSP caregiver), Camilla (with CBS), Robert (with PSP), Jenna (parent with PSP), Taylor (spouse with PSP), and Marnie (former PSP caregiver)
Video (Sorry - the first several minutes is without audio!)
Notes - coming soon!
PSP- TOP RESOURCES
Brain Support Network’s List of Top PSP Resources (which includes some “oldies but goodies”)
CBD - TOP RESOURCES
Brain Support Network’s List of Top CBD Resources (which includes some “oldies but goodies”)
RESEARCH
Research coordinators from Stanford and UCSF attended the event. They are enrolling people in studies or on the verge of it. We have provided links to their speaking about their research, study information, etc.
Jiwon Yeon, PhD, Stanford: investigating eye tracking behavior in PSP
Ze Yang, PhD, Stanford: researching biomarkers in CBS
Anthony Gonzalez Velasquez, Stanford: contact him to be added to a list of San Francisco Bay Area PSP people interested in research
Christine Walsh, PhD, UCSF: investigating sleep in PSP or CBS/CBD
Jacque Perkins, UCSF: recruiting PSP, CBS, and CBD for the TOPAZ trial. Age 60 and up.
PSP/CBD QUIZ
Take the quiz! See how you do on 25 questions about progressive supranuclear palsy and corticobasal degeneration.
SYMPOSIUM EVALUATION
Whether you attended the symposium live or are watching the recordings later, please share feedback through this very short survey.
THANK YOU!
If you attended on June 29, 2024, THANK YOU. We know it's not easy to dedicate several hours to education -- whether you are a person with PSP, CBD/CBS, or a caregiver. And thanks to those who submitted questions and completed a survey, giving us your feedback.
For the in-person event at Stanford, we thank those who volunteered their time to make the symposium successful -- members of the Brain Support Network community, Stanford Neurology staff, UCSF Neurology staff, and other volunteers. And we thank our exhibitors (Acadia Pharmaceuticals and Tobii Dynavox), on-site at Stanford.