CurePSP Virtual Spring 2022 Family Conference

When:
April 25, 2022 @ 11:00 am – 4:30 pm
2022-04-25T11:00:00-04:00
2022-04-25T16:30:00-04:00
Where:
Virtual Event

Save the Date for the CurePSP Virtual Spring Family Conference!

Among its various educational activities, CurePSP sponsors and organizes family conferences, providing people with the opportunity to learn more about PSP, CBD, and MSA and to develop a sense of community. We recognize that these diseases present daily challenges for patients and families.

The conferences include various speakers with in-the-field expertise movement disorder specialists and allied health care providers who work directly with patients and their families. These experts address issues related to day-to-day life, including the best ways to manage symptoms, the impact it has on families, and how to cultivate a perspective of meaning and joy despite the struggles of the disease.

Join us virtually on Monday, April 25th, 2022, from 11:00 AM – 4:30 PM ET for a day dedicated to learning management techniques, patient & caregiver panel, research updates, sleep in PSP/CBD/MSA, and Zoom breakout sessions.

Register

 

Agenda 


11:00 am – 11:15 am 

Welcome

Dr. Kristophe Diaz, Executive Director & Chief Scientific Officer, CurePSP


11:15 am – 12:00 pm 

Physical Therapy for PSP, CBD, & MSA

Dr. Cory Troyer, Physical Therapist at UC San Diego Health

During this session, Dr. Troyer will discuss research updates, exercise recommendations, physical therapy-specific interventions, along with mobility considerations for PSP, MSA, & CBD. Following this, there will be a 15-minute live Q&A session.


12:00 pm – 1:00 pm 

Research Panel 

Dr. Adam Boxer, Professor, Department of Neurology at University of California, San Francisco (UCSF)

Dr. Lawren Vandevrede, Assistant Professor, Department of Neurology at University of California, San Francisco (UCSF)

Dr. Kathleen Poston, Professor of Neurology & Neurological Sciences and (by courtesy) Neurosurgery at Stanford University Medical Center

Dr. Kristophe Diaz, Executive Director and Chief Science Officer at CurePSP

Each panelist will provide a brief update on research efforts in PSP, CBD, and MSA then answer questions from the audience. Dr. Kristophe Diaz will then lead a discussion on the future of research in neurodegenerative diseases.


1:00 pm – 1:45 pm 

Lunch 


1:45 pm – 2:30 pm 

Sleep in PSP, CBD, & MSA

Dr. Christine Walsh, Assistant Professor, Department of Neurology at University of California, San Francisco (UCSF)

Sleep disruptions are challenging for both patients and caregivers. During this session, we will review the current understanding of sleep/wake disruptions in PSP, CBD and MSA; we will hear about an on-going clinical sleep trial which grew from our observational studies; and we will briefly touch base on sleep hygiene factors.


2:30 pm – 3:30 pm 

Patient & Carepartner Panel: Lessons Learned Along Our Journey

Patients & Carepartners + Catherine Wang, MSW, GRSC, Clinical Social Worker at the Memory and Aging Center at University of California, San Francisco (UCSF)

During this panel, we will hear from patients & carepartners as they describe their journeys and the lessons that they’ve learned along the way. Catherine Wang, MSW, GRSC will lead the conversation, share her expertise, and facilitate a live Q&A session.


3:30 pm – 3:45 pm 

Closing 

Jessica Shurer, MSW, LCSW, Director of Patient & Carepartner Advocacy, CurePSP


3:45 pm – 4:30 pm 

Optional Zoom Breakout Sessions

These optional sessions will be hosted via Zoom to come together as a community, meet other people, and discuss the day’s topics. Members of the CurePSP Patient & Carepartner Advocacy team will be in each of the sessions.