2024 CurePSP Virtual Care Conference

The CurePSP Virtual Care Conference (previously known as the Virtual Family Conference) is an opportunity for our community to hear from various healthcare providers on topics that will be applicable to patients, care partners, and families. Many of these topics have been requested by our community members and will help you navigate your daily lives.

The Virtual Care Conference will consist of educational presentations related to palliative care, vision, apathy, wheelchair evaluations and the emotional journey of the disease. We will also have interactive sessions related to music therapy and chair yoga. All of the sessions will include a live Q&A after each presentation. Please submit questions via registration.

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

Registration is free of charge!

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Tuesday, November 19, 2024

1:00 – 1:05 PM: Welcome and Opening Remarks

Speaker: Courtney Malburg

1:05– 1:35 PM: Emotional Journey

Speaker: Lucielle Carriere, PhD

Navigating PSP, CBD, and MSA is challenging. From symptom onset to diagnosis and disease management, the journey can be filled with many emotions. As a clinical health psychologist, Dr. Carriere will explore the emotional difficulties of wading through these diagnoses and provide management options for theey that comes alongside a diagnosis of PSP, CBD, emotional journ or MSA.

1:35- 2:25 PM: Palliative Care

Speaker: Jocelyn Jiao, MD

There is often confusion around what palliative care is and who it’s intended for. Dr. Jiao will break down the process and how it can help with symptom management.

2:25 – 2:40 PM: Break

2:40 - 3:25 PM: Low Vision

Speaker: Marie Curtis, MS, OTR/L, SCLV

Many people with PSP, CBD and MSA report issues with vision. Marie will provide functional management techniques to overcome some of the hurdles associated with vision symptoms.

3:25 - 3:55 PM: Music Therapy

Speakers: Kerry Devlin, PhD, LPMT, MT-BC and Kyurim Kang, PhD, LPMT, MT-BC

In this interactive session, Kerry and Kyu will educate the audience on the clinical benefits of music therapy while leading them through a fun, user-friendly music therapy session.

3:55 - 4:55 PM: Advocating for Yourself

Speaker: Maria Schmidt, CRNP, DNP

The healthcare system can be difficult to navigate, especially when balancing symptom management, disease progression and logistics. Maria will break down how you can become your own advocate in a confusing healthcare system and provide tips to help you get the most comprehensive care possible.

4:55 - 5:00 PM: Closing Remarks

Speaker: Courtney Malburg

Wednesday, November 20, 2024

1:00 – 1:05 PM: Welcome and Opening Remarks

Speaker: Courtney Malburg

1:05– 2:20 PM: Care Partner Panel

Speakers: Karine Decker, Geff Lampshire and Mary Ann Weirks, moderated by: Courtney Malburg

Care partners in various stages of the caregiving journey will share their real and vulnerable experiences with care partner burnout, self-care, maintaining their own sense identity and relationships.

2:20- 2:40 PM: Advocacy

Speaker: Julie Balasalle, LCSW

CurePSP’s Advocacy Consultant, Julie Balasalle, will provide an update to CurePSP’s legislative priorities, answer questions from the audience and share future steps for CurePSP’s advocacy efforts.

2:40 – 3:10 PM: Chair Yoga

Speaker: Shari Schwarz

This interactive session will give audience members a moment to move and stretch in a safe manner and will provide members with takeaways to continue practicing safe yoga at home.

3:10 - 3:25 PM: Break

3:25 - 4:10 PM: Apathy

Speaker: Chi-Ying (Roy) Lin, MD, MPH

Many individuals with PSP, CBD, and MSA experience varying degrees of apathy as part of their unique symptom profiles. Apathy can be challenging to manage, but Dr. Lin will discuss its potential causes and the available treatment options for those affected.

4:10 - 4:55 PM: Wheelchair Evaluations

Speaker: Elaine Toskos, MAOTR/L, ATP/SMS

There are many considerations when deciding whether a wheelchair is the right next step. Elaine Toskos will walk us through the many benefits of using a wheelchair, what a wheelchair evaluation is, who to talk to and when to consider getting evaluated.

4:55 - 5:00 PM: Closing Remarks

Speaker: Courtney Malburg

*Agenda subject to change