PSP/CBD Research Update and Practical Conference Overview

One attendee reflected on the conference this way:  "Excellent speakers, all of them. This was a well-balanced program between research and practical."

The morning was focused on updates from nine researchers, with two panels.  The afternoon was focused on practical information from eight clinicians and laypeople, with two panels.

Nine generous families sponsored the videorecording of the conference.  Brain Support Network asked a medical writer to take notes throughout the conference.  See the conference agenda, full set of notes from the day, and link to the conference video.

Below, you will find:
* each speaker's one-page handout (distributed at the conference)
* most speakers slides (not all speakers allowed their slides to be shared)
* presentation or panel notes (prepared by BSN's medical writer)
* video of the presentations and panels

BSN makes these conference materials available to the public at no charge.  We thank the speakers and our donors.  Without their generosity, this conference would not have been possible.  Please help make our next conference possible by donating today.

WELCOME


Robin Riddle, CEO | Brain Support Network

Video: Opening Remarks

 

RESEARCH UPDATE – PART ONE


Alex Klein, PhD | CurePSP
Moderator of the panel

Panel: Research | Part 1 | Panel notes
Video

 

Adam Boxer, MD, PhD | UCSF MAC
Advances in therapeutic development for CBD and PSP

Handout
Slides
Presentation notes
Video

Richard Tsai, MD, MBA | UCSF MAC
Tau PET imaging in corticobasal syndrome

Handout
Slides
Presentation notes
Video

Dianna Wheaton, MS, PhD, CHES | FTD Registry
FTD Disorders Registry: A patient and caregiver registry to advance science

Handout
Slides
Presentation notes
Video

Lawrence I. Golbe, MD | Rutgers Robert Wood Johnson
A Cluster of PSP in Northern France: Is this the Key?

Handout
Slides (sorry, not available from speaker)
Presentation notes
Video

Daniel C. Lee, PhD | University of South Florida, Tampa
Understanding the role of polyamines during tauopathies

Handout
Slides
Presentation notes
Video

RESEARCH UPDATE – PART TWO


Alex Klein, PhD | CurePSP
Moderator of the panel

Panel: Research | Part 2 | Panel Notes
Video


Haung (Ho) Yu, PhD | Columbia
Clearing tau from neurons

Handout
Slides
Presentation notes
Video

Stewart Clark, PhD | University of Buffalo
Progress Toward an Animal Model of PSP

Handout
Slides
Presentation notes
Video

Adam Gerstenecker, PhD | University of Alabama at Birmingham
Cognitive, behavioral, and functional aspects of PSP

Handout
Slides
Presentation notes
Video

Gerard Schellenberg, PhD | Penn Neurodegeneration Genomics Center
What we know and don’t know about PSP and CBD genetics

Handout
Slides
Presentation notes
Video

PRACTICAL CONFERENCE – PART ONE


Robin Ketelle, RN | UCSF Memory & Aging Center
Moderator of the panel

Panel: Practical | Part 1 | Panel Notes
Video

 

Donna Schempp, LCSW | Unaffiliated
Taping into Your Resilience

Handout
Slides
Presentation notes
Video

Leslie Wolf, person with CBD
Holding Steady on Shaky Ground

Handout
Slides
Presentation notes
Video

Phil Myers, (former) caregiver to wife with PSP | Brain Support Network
Eight Things We Learned From This Journey

Handout
Slides
Presentation notes
Video

Jeanette Brown, MD (retired), person with PSP
Being (a) Patient with PSP

Handout
Slides
Presentation notes
Video

PRACTICAL CONFERENCE – PART TWO


Robin Riddle, CEO | Brain Support Network
Moderator of the panel

Panel: Practical | Part 2 | Panel Notes
Video


Sharon J Sha, MD, MS | Stanford
Understanding corticobasal syndrome and progressive Supranuclear palsy: What are tauopathies?

Handout
Slides
Presentation notes
Video

 

Megan DePuy, MBA, MS, SLP | Private Practice, San Mateo
Speech, Language, Swallowing treatment for PSP and CBD

Handout
Slides
Presentation notes
Video

Erica Pitsch, DPT, NCS | UCSF
Move it or lose it- strategies to stay mobile and stay safe

Handout
Slides
Presentation notes
Video

Heather E. Moss, MD, PhD | Stanford
Vision symptoms in PSP and CBD: what causes them and what can be done?

Handout
Slides (sorry, not available from speaker)
Presentation notes
Video