2022 CurePSP Virtual Fall Family Conference Day 2

When:
December 16, 2022 @ 11:30 am – 4:00 pm
2022-12-16T11:30:00-05:00
2022-12-16T16:00:00-05:00
Where:
Virtual Event
Contact:
Events

Join CurePSP for the 2022 Virtual Fall Family Conference! 

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

This year’s CurePSP Virtual Fall Family Conference will consist of pre-recorded sessions from our Philadelphia Fall Family Conference and live Q&A sessions.  The event will be split into two parts. The first part will be shown on Friday, December 9th, and the second will be shown on Friday, December 16th. 

We partnered with Penn Medicine to provide informative presentations on multidisciplinary care, physical therapy, research updates, social work, palliative care, and more.  

All sessions will be recorded and posted on our YouTube after the event.  

Registration is free of charge. 

 

AGENDA* (IN EASTERN TIME) 

Day Two: Friday, December 16, 2022 


11:30 AM – 12:00 PM: Optional Mix & Mingle

Mix & mingle with other attendees before the event begins at 12:00 PM ET!


12:00 PM – 12:10 PM: Welcome & Opening Remarks 

Speaker: Kristophe Diaz, PhD


12:10 PM – 12:55 PM: Navigating the Healthcare System: How to Advocate for Yourself and Your Loved One

Pre-recorded panel discussion from the Philadelphia Conference.

Speakers: Jessica Shurer, MSW, LCSW, Allan & Deb Taney, and Steve & Anne Wysowski

Navigating today’s healthcare system can be overwhelming, especially when managing several different physicians and specialists at once. It’s often hard to feel like you’re in control of your health care experience during your disease journey. In this panel discussion, Jessica Shurer, MSW, LCSW, Director of Clinical Affairs and Advocacy at CurePSP, will sit down with PSP and CBD patients and family care partners to talk through their experiences of being their own health care advocates.


12:55 PM – 1:25 PM: Overview of Multidisciplinary Care for Patients with Atypical Parkinsonian Syndromes

Pre-recorded presentation from the Philadelphia Conference. Dr. Deik will answer questions during the live Q&A later in the day.

Speaker: Andres F. Deik, MD

The management of atypical parkinsonian syndromes can be challenging. Penn Medicine believes in a multidisciplinary model of care, which allows patients and their families to navigate the different complications that can arise over time. In this lecture, Dr. Andres Deik will explain the role of neurologists, social workers, nurses, and therapists in the management of patients with PSP, CBD, and MSA.


1:25 PM – 1:55 PM: Break


1:55 PM – 2:25 PM: Bringing the Microscope to Clinic: Improving Diagnosis and Treatment of PSP and Related Conditions Through Detailed Study of the Human Brain

Pre-recorded presentation from the Philadelphia Conference.

Speaker: David Irwin, MD

In this session, Dr. David Irwin will review recent developments in biomarkers for PSP based on human autopsy brain tissue and discuss the importance of brain donation in PSP research.


2:25 PM – 3:00 PM: Palliative Care for Patients and Families with PSP, CBD and MSA

Pre-recorded presentation from the Philadelphia Conference.

Speaker: Matthew Mendlik, MD, PhD

Palliative care is defined as specialized medical care for people with serious illnesses. Dr. Matthew Mendlik will discuss how palliative care differs from hospice care, how this type of care has evolved and what types of patients and families would benefit from it.


3:00 PM – 3:45 PM: Live Q&A

Speakers: Jessica Shurer, MSW, LCSW and Andres F. Deik, MD

Jessica Shurer, MSW, LCSW, Director of Clinical Affairs and Advocacy at CurePSP, will lead a live Q&A session with Andres F. Deik, MD. They will be answering questions that were submitted during registration as well as any that are asked in the live chat.


3:45 PM – 3:50 PM: Closing Remarks

Speaker: Jessica Shurer, MSW, LCSW


We hope you can join us!  For any questions, please email events@curepsp.org 

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