11.17.22
CurePSP Expands Specialized Care Network for Rare Neurodegenerative Diseases
NEW YORK (November 17, 2022) /PRNewswire/ — CurePSP has announced the designat...
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Our Mission
To raise awareness, build community, improve care and find a cure for PSP, CBD and MSA.
Andy Maus Assumes Board Chair Ready for Progress
Andy Maus will apply his personal and professional experience to advancing the foundation’s mission. His connection with prime of life brain diseases is a personal one, with close family members who were affected by progressive supranuclear palsy (PSP), one of the three diseases for which CurePSP provides care, awareness, and research support.
CurePSP Expands Specialized Care Network for Rare Neurodegenerative Diseases
CurePSP has announced the designation of Queen’s Parkinson’s and Movement Disorders Center in Hawaii and the Department of Neurology at the University of Michigan as CurePSP Centers of Care, bringing the total to 30 centers across the United States and Canada.
CurePSP Virtual Family Conference (December 9th & 16th, 2022)
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.
CurePSP Venture Grant Applications Are Open
Our current venture Grants applications deadline is March 17th, 2023. CurePSP provides “seed funding” to investigators who have innovative ideas that need “proof of concept” in order to qualify for larger funding sources. CurePSP will fund studies on PSP and CBD with a particular interest in (i) molecular and cellular (pathological) mechanisms that may operate also in related diseases and (ii) translational clinical research involving PSP and CBD patients.
11.02.22
CurePSP is hiring! Join us in our mission!
Professional Opportunity Director / Associate Director of Scientific Affairs and...
11.02.22
Judy Coughlin, Wife of Former NFL Coach Tom Coughlin, Dies at 77
Judy Coughlin, the wife of ex-NFL head coach and executive Tom Coughlin, died We...
Dec
9
Fri
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.
Dec
12
Mon
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
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.
Subscribe to filtered calendar
Dec
9
Fri
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.
Dec
12
Mon
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
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.
Subscribe to filtered calendar
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