Educational Resources
Education is a powerful tool in navigating progressive supranuclear palsy (PSP), corticobasal denegation/syndrome (CBD/CBS) and multiple system atrophy (MSA). This collection of resources is designed to provide information on symptoms, management and treatment, guidance on disease trajectory and offer support. Education is at the heart of CurePSP's mission, reinforcing our commitment to care, consciousness and cure.
Brochure Catalogue
Thanks to the support of our donors, these brochures and educational pieces are available upon request, at no cost, and are suitable for public and healthcare professionals. To browse and order our bundle packets, click Information Packets below. Click on the images to find the online version to read, download or print.
Patient and Family Information Packets
Healthcare Professionals Information Packets
This booklet answers common questions around the diagnosis, symptoms and management of PSP. This booklet answers common questions around the diagnosis, symptoms and management of corticobasal degeneration/corticobasal syndrome (CBD/CBS). This booklet answers common questions around the diagnosis, symptoms and management of MSA. Learn more about CurePSP and how we fulfill our mission to serve those with PSP, CBD and MSA and their families. This resource is for rehabilitation therapists and social workers. It outlines discipline-specific treatments available to manage symptoms of PSP, CBD, and MSA. This emergency document organizes personal and medical information about PSP, CBD or MSA. It can be used for the person with PSP, CBD or MSA and their care partner to “grab and go” in the event of a medical emergency. This fact sheet provides guidance on how to tangibly support someone in your life who has a PSP, CBD or MSA diagnosis. It can feel intimidating to tell friends, family and others about a diagnosis of PSP, CBD or MSA. This fact sheet serves as a starting point and guide to sharing the diagnosis. A tool for people with PSP to fill out and use in case of an emergency. Keep the filled-out card in a wallet, purse or other place that is easily accessible. A tool for people with CBD to fill out and use in case of an emergency. Keep the filled-out card in a wallet, purse or other place that is easily accessible. A tool for people with MSA to fill out and use in case of an emergency. Keep the filled-out card in a wallet, purse or other place that is easily accessible. An in-depth resource to guide people through their journey with PSP, CBD and MSA. To receive a printed copy of the Guidebook, email your physical address to Kelsey Woods at [email protected]. A guide to help you understand the general and potential progression of PSP. Please note that this resource is not a clinical tool, and individual symptoms and timelines are different for everyone. A guide to help you understand the general and potential progression of CBD. Please note that this resource is not a clinical tool, and individual symptoms and timelines are different for everyone. A guide to help you understand the general and potential progression of MSA. Please note that this resource is not a clinical tool, and individual symptoms and timelines are different for everyone. Individuals with PSP, CBD and MSA can choose to donate a small tissue sample of their brain through the CurePSP Brain Donation Program. Learn more in this detailed guide. This resource, Professional In-Home Care: Where to Start and What to Ask, is composed of questions to help you decide if, when and how in-home care can be beneficial for you. Long-term care can refer to many types of care. This guide breaks down the long-term care options that are available and may be helpful for people with PSP, CBD or MSA. This resource defines palliative and hospice care, highlights their differences and how they can each provide support and comfort at different points in the disease journey. A resource for care partners by care partners. It outlines managing care, getting professional support and offers perspectives and pointers for care partners. This fact sheet aims to help with the grieving process and finding a new way forward. This journal is meant to guide you in understanding your grief and hear stories from others who have lost someone to PSP, CBD and MSA.
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Spanish Brochure Catalogue
Este libro es para profesionales de la salud y describe los diversos tratamientos disponibles para los síntomas de las enfermedades cerebrales primarias de la vida. Si su médico no conoce la PSP, pídanos que le enviemos este libro. El folleto Parálisis Supranuclear Progresiva: Algunas Respuestas está compilado por CurePSP y el experto de Parálisis Supranuclear Progresiva, el Dr. Larry Golbe. Para ver el folleto, haga clic en la imagen a la izquierda. El folleto La Degeneración Corticobasal: Algunas Respuestas está compilado por CurePSP y el experto en La Degeneración Corticobasal, el Dr. Larry Golbe. Para ver el folleto, haga clic en la imagen a la izquierda. El folleto Atrofia Multisistemica: Algunas Respuestas es un folleto de once páginas compilado por CurePSP y el experto en Atrofia Multisistemic, el Dr. Larry Golbe. Para ver el folleto, haga clic en la imagen a la izquierda.
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Best Practices in the Clinical Management of PSP and CBD
Frontiers in Neurology published a groundbreaking guide to best practices in the clinical management of progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) created under the auspices of CurePSP by the directors of its 25 Centers of Care and collaborators from their institutions. The guide was drafted by 37 top clinicians supervised by the Centers of Care steering committee.
Assistive Devices and Adaptive Equipment
CurePSP has collected the following suggestions for assistive devices and adaptive equipment from patients and families experiencing neurodegenerative diseases. While we hope you find these suggestions useful in your journey, none of CurePSP, its employees, officers or directors, has made any investigation of the suggestions made or products mentioned below.
Talking with Your Doctor
The best doctor-patient relationship is built on clear and open communication. The NIH compiled this informative brochure to help guide you through these conversations. You and your loved one can utilize this tool to help you select the best doctor, prepare for and navigate your appointments, and ensure you’re with a team of dependable healthcare professionals.