2022 CurePSP Fall Family Conference

When:
November 14, 2022 @ 8:30 am – 4:00 pm
2022-11-14T08:30:00-05:00
2022-11-14T16:00:00-05:00
Where:
Philadelphia Airport Marriott
Airport Terminal B
Philadelphia, PA 19153
USA

Join CurePSP for the 2022 Fall 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.

We will be hosting our 2022 Fall Family Conference at the Philadelphia Airport Marriott in Philadelphia, Pennsylvania on Monday, November 14th, 2022. This will be our first in-person Family Conference since 2019, and we can’t wait to see everyone! We will be partnering with Penn Medicine to provide informative presentations on multidisciplinary care, physical therapy, research updates, social work, palliative care, and more. Limited hotel rooms are available to reserve at the Philadelphia Airport Marriott. You can find out more by clicking on the link below.

For those that can’t join us in person, we will be hosting our 2022 Virtual Fall Family Conference on Friday, December 9th and Friday, December 16th.  This will be split between two half days and include the recorded presentations from our in-person conference in Philadelphia as well as other live sessions.  Click here  to learn more. 

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

 

AGENDA* 

Sunday, November 13th  

5:00 – 7:00 PM: Welcome Drinks

Join us for welcome drinks in Salons F & G at the Philadelphia Airport Marriott and meet CurePSP staff & other event attendees. Drinks and light appetizers will be served. Please RSVP during the checkout process when purchasing your ticket. If you’d like to change your RSVP, please email events@curepsp.org.

Monday, November 14th  

All sessions will be held in Salon A-D at the Philadelphia Airport Marriott. 

8:30 – 9:30 AM: Breakfast & Mingle 

A light breakfast will be served in the event space.  The menu will include oatmeal with assorted toppings, juices, pastries, bagels, diced fruit, yogurt, water, and coffee/tea. 

 9:30 – 9:45 AM: Welcome & Opening Remarks 

Speakers: Larry Globe, MD & Jessica Shurer, MSW, LCSW 

 9:45 – 10:15 AM: Overview of Multidisciplinary Care 

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.

10:15 – 10:45 AM: Physical Therapy 

Speaker: Heather Cianci, PT, MS, GCS 

During this session Heather Cianci will discuss different ways to stay active, mobile, and safe while living with PSP, CBD, or MSA.

10:45 – 11:15 AM: Coffee Break 

Snacks, coffee, and tea will be served. 

11:15 – 11:45 AM: Research Updates 

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.

11:45 – 12:30 PM: The Role of Patients and Care Partners in Multidisciplinary Team Care

Speakers: Andres F. Deik, MD, Heather Cianci, PT, MS, GCS, and David Irwin, MD Suzanne Reichwein, MSW

Suzanne Reichwein, MSW, Manager of Research & Clinical Programs at Penn Medicine will sit down with several health care professionals within the Penn Medicine network to discuss and define person-centered care through a multidisciplinary approach, including how teams create plans of care and how they can help patients and families prioritize the offered recommendations.

12:30 – 1:30 PM: Lunch Break 

Lunch will be served in the event space.  The menu will include squash soup, tomato mozzarella salad, arugula salad, chicken marsala, oven roasted cod, penne pasta with vodka sauce, roasted vegetables, brownies & cookies, soft drinks, and coffee/tea. 

1:30 – 2:00 PM: Social Work 

Speaker: Lauren Zelouf MSW, LCSW 

When meeting with patients with MSA, PSP or CBD and their care partner(s), the Social Worker aims to meet them where they are in their journey with their Atypical Parkinsonism. The Social Worker is tasked with assessing a person’s psychological, social, and emotional functioning as it relates to living with their neurodegenerative disease. In this session, Lauren Zelouf will discuss the role of Social Work and how the Social Worker can best support the patient and care partner(s).

 2:00 – 2:30 PM: Palliative Care 

Speaker: Matthew Mendlik, MD, PhD 

 2:30 – 2:50 PM: Stretch Break 

 2:50 – 3:35 PM: Navigating the Healthcare System: How to Advocate for Yourself and Your Loved One

Moderated by Jessica Shurer, MSW, LCSW 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, MSA and CBD patients and family care partners to talk through their experiences of being their own health care advocates.

 3:35 – 3:50 PM: Closing Remarks 

Speaker: Jessica Shurer, MSW, LCSW 

 3:50 – 4:45 PM: Snacks & Mingle 

Philadelphia staples will be served, including TastyKakes, cheesesteak spring rolls, Philly soft pretzels, soft drinks, water, & coffee/tea. 

*Agenda subject to change. 

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