https://us02web.zoom.us/meeting/register/tZAqf-CorTIiHdUFmS9Of21qfhFY5-CVJPZx

Dec
9
Fri
2022 CurePSP Virtual Fall Family Conference Day 1 @ Virtual Event
Dec 9 @ 11:30 am – 4:00 pm

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 One: Friday, December 9, 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: 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 + live Q&A session. 

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.


12:55 PM – 1:40 PM: Mobility Tips & Tricks for Individuals Living with PSP, CBD, and MSA 

Pre-recorded presentation from the Philadelphia Conference + live Q&A session. 

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.


1:40 PM – 2:10 PM: Break


2:10 PM – 2:55 PM: Overview of Multidisciplinary Care for Patients with Atypical Parkinsonian Syndromes

Pre-recorded presentation from the Philadelphia Conference + live Q&A session. 

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.


2:55 PM – 3:40 PM: The Role of Patients and Care Partners in Multidisciplinary Team Care Pre-recorded panel discussion from the Philadelphia Conference.

Pre-recorded panel discussion from the Philadelphia Conference. 

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


3:40 PM – 3:50 PM: Closing Remarks 

Speaker: Jessica Shurer, MSW, LCSW 


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: The Role of Social Work in the Management of MSA, PSP, & CBD

Pre-recorded presentation from the Philadelphia Conference + live Q&A session.

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).


12:55 PM – 1:40 PM: Palliative Care

Pre-recorded presentation from the Philadelphia Conference + live Q&A session.

Speaker: Matthew Mendlik, MD, PhD


1:40 PM – 2:10 PM: Break


2:10 PM – 2:55 PM: Navigating the Healthcare System: How to Advocate for Yourself and Your Loved One

Pre-recorded panel discussion from the Philadelphia Conference.

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.


2:55 PM – 3:05 PM: Closing Remarks

Speaker: Jessica Shurer, MSW, LCSW


*Agenda subject to change. 

 

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

register  donate

Dec
12
Mon
Ask the Expert: Assessing Cognitive Changes with PSP, CBD and MSA @ Virtual Webinar
Dec 12 @ 2:00 pm – 3:00 pm
 

Join CurePSP for Ask the Expert on Assessing Cognitive Changes with PSP, CBD and MSA on December 12, 22 at 2:00 PM – 3:00 PM ET!

People diagnosed with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) frequently report changes to cognitive functioning as the disease progresses. This is particularly a symptom experienced in PSP. Mild cognitive deficits can be present at time of diagnosis and are often in the areas of processing, organization and attention. Acknowledging changes in memory and thinking can be scary, but ignoring them only leads to more challenges with care and safety. Neuropsychological evaluations provide objective and comprehensive assessments of cognitive strengths and weaknesses, as well as systematically investigate behavioral and psychiatric disturbances that may also be present, such as anxiety or personality changes. In this webinar, Dr. Travis Turner, neuropsychologist at the CurePSP Center of Care at the Medical University of South Carolina, will provide a brief overview of the cognitive changes associated with PSP, CBD and MSA, describe the neuropsychological evaluation process and discuss how the information obtained informs diagnosis, prognosis and treatment planning.

 

About Travis Turner, PhD

Travis H. Turner, PhD, is assistant professor and director of the Neuropsychology Division at the Medical University of South Carolina. He is also senior clinical director of Movement Disorders at WCG-VeraSci. He studied psychology and neuroscience at the University of Pittsburgh, earned his doctorate in clinical psychology through San Diego State University and the University of California, San Diego, and completed internship and postdoctoral training at Medical University of South Carolina (MUSC). He has been active in clinical and research efforts with the Movement Disorders program at MUSC for over 15 years. Clinical activities include neuropsychological evaluations and focused interventions for patients with Parkinsonian disorders. His research program is aimed at developing new ways to measure and treat neuropsychiatric symptoms in movement disorders. Current projects include standardization of computerized behavioral saccade tests, neuropsychological assessment via videoconferencing (i.e., telemedicine), and clinical trials. He supervises neuropsychology postdoctoral fellows and provides training to graduate students, medical students, interns, and residents. When he’s not working, he enjoys fishing, building furniture, and spending time with his family. 

Registration is free of charge.  

The links to the webinar will be emailed to registrants after registration, two hours before the event, and fifteen minutes before the event.

To support CurePSP’s mission to raise awareness, build community, improve care and find a cure for PSP, CBD and MSA, please go to this link or donate at registration checkout.

 

Dec
16
Fri
2022 CurePSP Virtual Fall Family Conference Day 2 @ Virtual Event
Dec 16 @ 11:30 am – 4:00 pm

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: The Role of Social Work in the Management of MSA, PSP, & CBD

Pre-recorded presentation from the Philadelphia Conference + live Q&A session. 

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).

Speaker: Lauren Zelouf, MSW, LCSW 

 12:55 PM – 1:40 PM: Palliative Care 

Pre-recorded presentation from the Philadelphia Conference + live Q&A session. 

Speaker: Matthew Mendlik, MD, PhD 

1:40 PM – 2:10 PM: Break  

2:10 PM – 2:55 PM: Navigating the Healthcare System: How to Advocate for Yourself and Your Loved One

Pre-recorded panel discussion from the Philadelphia Conference. 

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.

2:55 PM – 3:05 PM: Closing Remarks 

Speaker: Jessica Shurer, MSW, LCSW 

*Agenda subject to change. 

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

Register  donate

 

Mar
18
Sat
The 20th Southwest Florida PSP Support Group Awareness and Memorial Walk @ Mackle Park, Marco Island, Florida
Mar 18 @ 10:30 am


Save the Date for the 20th Southwest Florida PSP Support Group Awareness and Memorial Walk!

The purpose of the Southwest Florida PSP Support Group Awareness and Memorial Walk is to honor those that have passed from these diseases, support those living with them now, raise awareness, educate the public, raise money to help find a cure, and let people know about our support group in Naples.

Our group is proud of the success of our walks over the years and is grateful to the public for their support. We have people coming from across the country and some from other countries. Everyone has fun on the walks. There will be food, entertainment, a silent auction, and chances to win great prizes! For those that have never attended one of our walks, you won’t want to miss this one!

Our 20th Southwest Florida PSP Support Group Awareness and Memorial Walk will be held on Saturday, March 18th, 2022, at Mackle Park, Marco Island, Florida.

REGISTER

More Information ON the Walk

Online Support Groups

Many people cannot travel to meet with an in-person support group, or do not want to attend one, but are still looking for the comradery and comfort they provide. CurePSP recognizes this need and sponsors online support groups that allow participants the opportunity to interact with other patients, caregivers, and family members affected by PSP, CBD, MSA, or related brain diseases by using their computer, telephone (charges may be incurred), or both. By using a computer the facilitator is able to share their screen with the attendees, and can share documents, images, and other visual aids. This has proven to be a very helpful feature for the sessions and beneficial for those attending. 

TO REGISTER AND USE:

  • Click the meeting link for the group that suits you and register for the online program
  • At the meeting time, use your computer to go online and follow the meeting link for your group
  • Follow the prompts and choose to either listen in with your computer’s microphone and speakers or follow the instructions to dial in with your phone (instructions also included below)

For more information about the meeting you want to participate in, please contact the Facilitator. If you have other questions about support services, please email info@curepsp.org.

PSP/CBD/MSA 101: An Educational Support Series for the Newly Diagnosed

Meeting Times: October 19, 20, 21 from 3 – 4:15pmET
Registration Links:  

October series: 

https://us02web.zoom.us/meeting/register/tZMudOCoqTgvGNbTEV0MpV-Ho9FSwsH_9o0l

Facilitators:  Joanna Teters teters@curepsp.org, Kelsey Woods woods@curepsp.org

Please register for only one month.

Please note that while we do offer other support groups for patients and families who are beyond the “early stages” of PSP, CBD or MSA, this group is reserved for those who are in the beginning stages of diagnosis and symptom development.

People with PSP/MSA/CBD and their Carepartners

Meeting Times:  Third Thursday of each month from 3:00pm-4:30pm EST
Registration Link: https://us02web.zoom.us/meeting/register/tZEtcO6sqzspHtXUtmqAN93amV39diWvEbw4
Meeting Tel: +1 646 558 8656          Meeting ID:  850 7745 0341         
Facilitators:  Diane Breslow MSW, LCSW dbreslow11@icloud.com and Jessica Shurer MSW, LCSW jshurer@neurology.unc.edu

 

Carepartners of People with PSP/MSA/CBD

Meeting Times:  Second Thursday of each month from 3:00pm-4:30pm
Registration Link:  https://us02web.zoom.us/meeting/register/tZAvceitrzotGdfteL8WR2LX01SjASUJ1Efr
Meeting Tel: +1 646 558 8656         Meeting ID:  842 6151 1733            
Facilitators: Diane Breslow MSW, LCSW dbreslow11@icloud.com and Ileen McFarland, ileen@earthlink.net

 

(Women Only) Carepartners of People with PSP/MSA/CBD Support Group

Meeting Time(s):  First Thursday of each month from 2:30pm-4pm EST and Third Wednesday of the month from 6:30-8pm ET
Registration Link:  https://us02web.zoom.us/meeting/register/tZIod–prDIiG93cgs_-lKhJJ-E2Et5mW3U0
Meeting Tel: +1 646 558 8656     Meeting ID:  865 0612 9819
Facilitators:  Nancy Montgomery njmont76@gmail.com and Janis Appel jappel1130@gmail.com  

(Men Only) Carepartners of People with PSP/MSA/CBD Support Group

Meeting Times:  First Tuesday of each month from 8:00pm-9:00pm EST and first Thursday of each month from 5:00pm-6:00pm EST
Registration Link: https://us02web.zoom.us/meeting/register/tZIodu2qrjsqH9UvjxLyw__eP3Ep21zHKmvj
Meeting Tel: +1 646 558 8656     Meeting ID:  865 1420 0051
Facilitators:  Tom Tait tom.tait@comcast.net and Bill Furlow billfurlownc@gmail.com  

People with PSP

Meeting Times: 2nd & 4th Monday of each month from 7:30pm – 8:30pm Eastern
Meeting Link: https://us02web.zoom.us/meeting/register/tZUpce-rrD4qHdVzkfx0e8OSq94-UEu7dcaC
Meeting Tel: +1 646 558 8656    Meeting ID: 814 6632 5071
Facilitator: Margo Silk, marsilk115@aol.com

Carepartners of People with PSP

Meeting Time: 3rd Tuesday of each month at 8:00pm Eastern
Meeting Link: https://attendee.gotowebinar.com/register/7620701206235337739
Meeting Tel: 914-614-3221; Access Code: 732-403-054
Facilitator: Janet Edmunson, 508-308-4195, janet@janetedmunson.com

Carepartners of People with Advanced PSP

Meeting Time: 4th Wednesday of each month from 7:00pm – 8:00pm Eastern
Meeting Link: https://attendee.gotowebinar.com/register/8583419301916409613
Meeting Tel: 914-614-3221; Access Code: 732-403-054
Facilitator: Steve Garcia, 973-962-9356, advancedstagespsp@gmail.com

 

People with CBD and their Carepartners

Meeting Time: 1st Tuesday of each month at 6:00pm EST 
Meeting Link: https://us02web.zoom.us/meeting/register/tZwrcu2vrTIsE9angifxZkh2PCyWI182Ouin
Meeting Tel: (213) 929-4232; Access Code: 611-128-331
Facilitator: Karry Forsythe, 903-683-0010, forsythe76@gmail.com

People with CBD and their Carepartners

Meeting Time: 3rd Tuesday of each month at 4:00pm Eastern 
Meeting Link: https://attendee.gotowebinar.com/register/6157272128304268816
Meeting Tel: 631-992-3221; Access Code: 447-016-877
Facilitator: Janet Edmunson, 508-308-4195, janet@janetedmunson.com

People with MSA

Meeting Time: 3rd Monday of each month at 8:00pm Eastern 
Meeting Link: https://us02web.zoom.us/meeting/register/tZUtf-CgrD0uG9CGa7yq3806EcOd8xhmUaqR 
Meeting Tel: +1 646 558 8656 Access Code: 810 8982 6414
Facilitator: Cathy Chapman, 307-332-4144, cec@wyoming.com 

Carepartners of People with MSA

Meeting Time: 1st Monday of each month from 8:00pm – 9:00pm Eastern 
Meeting Link: https://us02web.zoom.us/meeting/register/tZIqf-uhrDgoHdfeY_XXwpyWe602VedTnWbK
Meeting Tel: +1 646 558 8656 Access Code: 867 8292 3273
Facilitator: Tom Tait, tom.tait@comcast.net, 856-725-2450

Stronger Together: Support for Gen Z Affected by PSP/CBD/MSA

Meeting Time: 4th Wednesday of each month at 3:00pm EST 
Meeting Link: https://us02web.zoom.us/meeting/register/tZEtd-mrrTkiEtGEHGBS-uB-AmiKAocBkeUP 
Meeting Tel: (646) 558-8656; Access Code: 850 0033 2885
Facilitator: Emma Wodwaski wodwasec@udmercy.edu and Nathan Wodwaski wodwasnj@udmercy.edu

Adult Children of People with PSP/CBD/MSA

Meeting Time: 2nd Wednesday of each month at 8:00pm EST 
Meeting Link: https://us02web.zoom.us/meeting/register/tZUld-mhqzIiHNFXylFSnuvb-4o_0uW7Ydv_ 
Meeting Tel: +1 646 558 8656 ; Access Code: 818 0095 9865
Facilitator: Laurie Spindler, email lspindler16@gmail.com 

After The Loss: A Bereavement Support Group for Carepartners

Meeting Times: 3rd Tuesday of each month at 2:00pm Eastern
Registration Link:  https://us02web.zoom.us/meeting/register/tZwtdu-urz8rHdSU-qMSeeVgfEAMunr3e7bp
Meeting Tel: +1 646 558 8656         Meeting ID: 880 1661 4170              
Facilitators: Diane Breslow MSW, LCSW dbreslow11@icloud.com and Meghan Sweeney, LCSW meghansweeney1@gmail.com

This group is intended only for those who have lost loved ones to PSP/MSA/CBD or a related disease in the past year.