CurePSP Virtual Spring Family Conference: April 25, 2022
On Monday, April 25, 2022, CurePSP will host its Virtual Spring Family Conference.
On Monday, April 25, 2022, CurePSP will host its Virtual Spring Family Conference. Persons diagnosed with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA), their families, and caregivers can learn about disease management techniques and research updates.
The event will be held from 11:00 a.m. until 4:30 p.m. Eastern Daylight Time (8:00 a.m. to 1:30 p.m. Pacific). General registration is $10. A code is available for those who require financial assistance.
The conference will also address physical therapy techniques, discuss sleep issues, feature a patient and caregiver panel, and have breakout sessions. Speakers will include experts with movement disorder knowledge and allied health care providers who work directly with patients and their families.
Experts will address issues related to:
- Day-to-day life and the best ways to manage symptoms
- The impact of these diseases on the family
- How to preserve a perspective of meaning and joy despite the struggles of the disease
Those who register will be emailed the link a few days prior to April 25 as well as that morning.
Presentations will be available on CurePSP's YouTube channel a few weeks after the event. Attendees will receive an email when they are ready.
Get Conference Materials
The CurePSP Guidebook, which will be referenced during the conference, is available to view for free on the CurePSP resources page or the 140-page booklet can be purchased online.
AGENDA
11:00 a.m. - 11:15 a.m. Welcome
- Dr. Kristophe Diaz, Executive Director & Chief Scientific Officer, CurePSP
11:15 a.m. - 12:00 p.m. Physical Therapy for PSP, CBD & MSA
- Dr. Cory Troyer, Physical Therapist at UC San Diego Health
Dr. Troyer will discuss research updates, exercise recommendations, physical therapy-specific interventions, and mobility considerations. There will be a 15-minute live Q&A session.
12:00 p.m. - 1:00 p.m. 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 and then answer questions from the audience. Dr. Diaz will then lead a discussion on the future of research in neurodegenerative diseases.
1:00 p.m. - 1:45 p.m. Lunch
1:45 p.m. - 2:30 p.m. 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. Dr. Walsh will review the current understanding of sleep/wake disruptions in PSP, CBD, and MSA, provide information about an ongoing clinical sleep trial; and discuss sleep hygiene factors.
2:30 p.m. - 3:30 p.m. Patient & Carepartner Panel: Lessons Learned Along Our Journey
- Patients
- Carepartners
- Catherine Wang, MSW, GRSC, Clinical Social Worker at the Memory and Aging Center at the University of California, San Francisco (UCSF)
Patients and carepartners will describe their journeys and the lessons that they've learned. Catherine Wang, MSW, GRSC, will lead the conversation, share her expertise, and facilitate a live Q&A session.
3:30 p.m. - 3:45 p.m. Closing
- Jessica Shurer, MSW, LCSW, Director of Patient & Carepartner Advocacy, CurePSP
3:45 p.m. - 4:30 p.m. Optional Zoom Breakout Sessions
These optional sessions will be hosted on 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.
About CurePSP
CurePSP is a nonprofit organization working to increase awareness, advocate for patients and families, and fund research for devastating prime-of-life neurodegenerative diseases, including PSP, CBD, and MSA. CurePSP provides advocacy and support for patients, families, and caregivers; education for physicians and allied healthcare professionals; and funding for research.