CurePSP Family Conferences
Among its various educational activities, CurePSP sponsors and organizes family conferences across the country, 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.
In addition to regular webinars and other educational activities, CurePSP organizes family conferences virtually or in-person across the United States, often in partnership with team members from the CurePSP Center of Care network. Not only do these conferences offer an opportunity to gather information about the diagnoses, treatments, resources and helpful tips, the individuals and families in attendance will often share with us that the conference presented a powerful reminder that they are not alone in their disease journey. Attendees leave the meeting having forged new friendships and a stronger sense of community with others living with PSP, CBD and MSA.
CurePSP also has a comprehensive YouTube channel with a variety of informative videos.
2021 CurePSP Fall Virtual Family Conference
Social, Communication and Swallowing Safety Needs with Matt McKeon
In this session, Matt McKeon addresses the unspoken social, communication and swallowing safety needs of those with PSP, MSA and CBD.
Navigating Social Security Disability Insurance with Mary Jane Berry
Mary Jane Berry provides a basic understanding of the Social Security Disability Insurance (SSDI) process. She explains how to apply for SSDI and gives some tips to help with the process. In addition, Mary Jane shares the Compassionate Allowances Program that identifies claims where the applicant’s disease or condition clearly meets Social Security’s statutory standard for disability.
Caregiver Perspective Panel with CurePSP Community Members and Jessica Shurer
In this panel, we hear from members of the CurePSP community as they describe their caregiver experience and offer tips and tricks for caregiving at home, caregiving away from home and caregiving communication.
Research Updates with Dr. Anne-Marie Wills
Dr. Anne-Marie Wills focuses on current and upcoming clinical research topics in PSP, including imaging studies, clinical trials and how to find clinical research studies near you.
Play all videos from the 2021 CurePSP Fall Virtual Family Conference
2021 CurePSP Virtual Family Spring Conference
Welcome with Dr. Kristophe Diaz and Tour of CurePSP Resources with Joanna Teters
Dr. Kristophe Diaz, CurePSP, Vice President of Scientific Affairs, welcomes all attendees at the 2021 CurePSP Virtual Family Spring Conference. Joanna Teters, CurePSP, Community Outreach & Resource Manager, gives a tour of CurePSP Resources.
Neuro-Ophthalmology, Dr. Scott Haines
Dr. Scott Haines, VCU Health, discusses management of common ophthalmologic aspects of PSP, such as photophobia, dry eyes/ ocular surface disease and bifocals/prism glasses.
Patient Perspective Panel with Mathew J. Barrett, MD and Bobby Hand, DPT
Mathew J. Barrett, MD and Bobby Hand, DPT, will discuss the current management of PSP with an emphasis on the importance of multi-disciplinary, ongoing research, rehabilitation, and assistive devices. The panel will also feature patients discussing what it is like to be a patient for the newly diagnosed and what it is like to take part in a clinical trial.
FreeWill with Jada Gale
Estate planning with wills and advances directives are traditionally considered complex, scary, and expensive. That's why CurePSP and FreeWill have a tool to help create these important documents. All estate plans made using FreeWill are FREE, 100% legal, and specifically tailored to your jurisdiction.
2020 CurePSP Virtual Family and Caregiver Conference
Stress Strategies and Community Support Building, Catrina Nieser
Catrina Nieser is a Neurodiagnostics Care Coordinator at UT Southwestern Medical Center. Catrina Nieser shares the effects of stress, coping mechanisms to manage stress, and how to easily access
Nutrition for Caregivers and Patients
Jamie Lynn Garry, MS, RD, LDN, CBDT, RYT, Senior Clinical Research Dietitian, Mansi Sharma, BS, and Anne-Marie Wills, MD, MPH share tips for healthy eating when dealing with movement disorders for caregivers and patients at the 2020 CurePSP Virtual Caregiver Conference.
Power of Posture and Breath, Fernando Coelho
Yoga Instructor, Fernando Coelho, shares how to harness the power of our posture and breath to create more physical energy and an emotional grounding at the 2020 CurePSP Virtual Caregiver Conference.
Palliative & Hospice Care: Getting the Right Care at the Right Time, Lori Bishop
Lori Bishop examines the difference between palliative care and hospice; examines hospice benefit, and looks at the eligibility criteria for hospice care for patients with PSP and similar diseases at the 2020 CurePSP Virtual Family Conference.
2019 CurePSP and UNC Family Conference
How to Prepare for Your Appointments and Available Treatment Options, Miriam Sklerov, MD, MS
Miriam Sklerov, MD, MS discusses what you need to bring, what questions to ask, how to keep track of what the doctor says throughout the appointment, and what are the available treatment options.
Allied Health Panel and the Importance of Staying Active
The benefits of staying active throughout this journey with neurodegenerative disease. Ways to integrate staying active in everyday plans and how to ensure safety throughout the day.
Building a Support Network Panel
Panel with Jessica Shurer, MSW, LCSW; and Mary Manley Moderated by Ileen McFarland, CurePSP Board of Directors.
Caregiver Firsthand Experience Panel
This panel features caregivers sharing what they learned through their caregiving experiences.
2019 Patient and Caregiver Education Day
Oculomotor and Vestibular Changes Associated with Parkinsonisms, Carrie Holman, PT, DPT
Carrie Holman, PT, DPT, is a split therapist at Sheltering Arms Rehabilitation Center. Carrie Holman explains the oculomotor and vestibular changes associated with parkinsonisms at the 2019 Patient and Caregiver Education Day.
Building Your Wellness Team, Robert Hand, PT, DPT, NCS, MSCS
Robert Hand, PT, DPT, NCS, MSCS is the leader at the Parkinson's disease clinical program at Sheltering Arms Rehabilitation Centers, a board-certified clinical specialist in neurologic physical therapy, and a member of the International Movement Disorders Society and APTA Academy of Neurology. Robert Hand explains how to build your wellness team at the 2019 Patient and Caregiver Education Day.
Assistive Devices, Stephanie Ross, PT, DPT, NCS
Stephanie Ross, PT, DPT, NCS works at the Virginia Commonwealth University Health System and was the first therapist to start in the Neuroscience, Orthopaedic and Wellness Center clinic. Stephanie Ross talks about assistive devices at the 2019 Patient and Caregiver Education Day.
Swallowing Safety: Diet & Considerations for Peg Placement, Brittany R. Reed, M.Ed., CCC-SLP
Brittany R. Reed, M.Ed., CCC-SLP is a speech-language pathologist at Hunter Holmes McGuire VA Medical Center in the PolyTrauma Outpatient Center. Brittany R. Reed talks about swallowing safety, diet, and considerations for peg placement at the 2019 Patient and Caregiver Education Day.
2018 CurePSP and Mayo Clinic Family Conference
PSP, CBD, MSA, and the Brain
The Brain, PSP, CBD, MSA, and Available Resources by Alex Klein, PhD
Making a Diagnosis of PSP, CBD, or MSA
Making a Diagnosis of PSP, CBD, or MSA. Jim Bower, MD, Professor of Neurology, Mayo Clinic. How does a neurologist determine which disease a patient has? Dr. Bower explains the process.
Research into PSP and CBD
Dr. Brad Boeve, Director, Division of Behavioral Neurology, Department of Neurology, Mayo Clinic. In this video, Dr. Boeve explain what a clinical trial is, what the latest research is, and what the local options are for clinical trials.
PSP, CBD, and MSA Diseaese Management
Anhar Hassan, MBBCh, Assistant Professor and Movement Disorders Staff Neurologist, Mayo Clinic. In this video, Anhar Hassan discusses of early and late symptoms in PSP, CBD, and MSA, and the treatments available for these diseases.