Educational Resources
A key part of CurePSP’s mission of care, consciousness, and cure is to provide educational information on PSP, CBD and MSA. These resources are anyone seeking to educate themselves about the symptoms, trajectory, treatments, and management of these diseases.
The CurePSP Guidebook
We are proud to bring you the CurePSP Guidebook. This signature publication features 150 pages of the latest information on PSP, CBD, and MSA and is a comprehensive reference for patients, family, carepartners, and health professionals.
Click here to view a digital version of CurePSP Guidebook
To receive a printed copy of the Guidebook, contact Kelsey Woods at 443-578-5667 or woods@curepsp.org.
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.
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
PSP: Some Answers
Written in partnership with people living with PSP and healthcare professionals, this booklet provides answers to common questions around the diagnosis, symptoms, and management of progressive supranuclear palsy.
CBD: Some Answers
Written in partnership with people living with CBD and healthcare professionals, this booklet provides answers to common questions around the diagnosis, symptoms, and management of corticobasal degeneration.
MSA: Some Answers
Written in partnership with people living with MSA and healthcare professionals, this booklet provides answers to common questions around the diagnosis, symptoms, and management of multiple system atrophy.
Carepartner Guidebook
The CurePSP Carepartner Guidebook outlines managing care and getting professional support, being a Carepartner, making plans, and Carepartners’ perspectives and pointers.
CurePSP Brain Donation Assistance Program
CurePSP has proudly assisted hundreds of families with the expenses related to brain donation and works closely with the Brain Bank at the Mayo Clinic to make tissue samples available to qualified scientists world-wide.
Allied Health Brochure
Education is key for improvement of care. This resource is specifically for rehabilitation therapists and social workers, and outlines discipline-specific treatments available to manage symptoms of PSP, CBD, and MSA.
General Information
Learn more about CurePSP and how we fulfill our mission to serve those with progressive supranuclear palsy (PSP) corticobasal degeneration (CBD), multiple system atrophy (MSA) and their families.
PSP, CBD, MSA Medical Alert Cards
CurePSP has printed medical alert cards for patients of PSP, CBD, and MSA. These cards explain the disease and the symptoms, and are vital in an emergency to convey the precise nature of the illness. These are available upon request.
PSP Disease Summary Sheet
The PSP disease summary sheet is a single-page outline of the disease – description, definition and symptoms. A great resource to leave with your doctor.
CBD Disease Summary Sheet
The CBD disease summary sheet is a single-page outline of the disease – description, definition and symptoms. A great resource to leave with your doctor.
MSA Disease Summary Sheet
The MSA disease summary sheet is a single-page outline of the disease – description, definition and symptoms. A great resource to leave with your doctor.
CurePSP Connection Newsletter
The PSP Connection Newsletter features the progress CurePSP is making on its mission of care, consciousness, and cure. Available by mail or free download.
CurePSP Estate Planning Guide
The CurePSP Estate Planning Guide is a valuable tool that can help you organize your estate, and includes step-by-step instructions on creating and managing an estate plan.
Grab and Go Document
This Emergency Document is an easy to use, comprehensive four-page document that was designed to organize all personal and symptomatic history for both the patient and the carepartner to “grab and go” in the event of a medical emergency.
Understanding Palliative and Hospice Care
This CurePSP pamplet, Understanding Palliative and Hospice Care, is to help learn about the Care Options defined as Palliative Care and Hospice Care, and the available resources that can help you make informed decisions about enlisting these services.
Levels of Care
This CurePSP pamphlet, Levels of Care, will help you to understand the spectrum of options and to become aware of questions to ask when searching for a type of care or care facility.
Understanding the Use of Psychotropic Medications
The purpose of this CurePSP pamphlet is to help you navigate the process of seeking evaluation and treatment of psychiatric symptoms and to understand the potential benefits and side effects of medications for those symptoms.
Facing Loss and the End of your Caregiver Role
The purpose of this CurePSP pamphlet, Facing loss and the end of your caregiver role, is to help you with the grieving process and with mapping a new course for yourself.
Understanding Advance Healthcare Planning
This CurePSP pamphlet, Understanding Advance Healthcare Planning, will help you to learn about the possible late-stage treatment options for neurodegenerative disease, as well as to understand the various kinds of planning documents.
Supporting Someone Diagnosed with PSP/CBD/MSA
The purpose of this CurePSP pamphlet, Supporting someone diagnosed, is to offer guidelines and suggestions to you for acknowledging, discussing, and remaining available to the diagnosed person in your life.
Talking About Your Diagnosis
The purpose of this CurePSP pamphlet, Talking about your diagnosis, is to help you to think through and decide how, when, and what you might want to tell your family and friends about your diagnosis.
Life After Loss
We are proud to bring you the Life After Loss: A Journal for Navigating the Bereavement Journey. This signature publication features 30 pages on understanding grief, mourning, and bereavement along with shared journeys in grief from our community.
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.
Spanish Brochure Catalogue
Funding provided by Mr. & Mrs. Henry G. Cisneros in memory of Pauline Cisneros Polette. These brochures and educational pieces translated by Andres Deik, MD, MSEd, and are available upon request, at no cost, and are suitable for public and healthcare professionals. They can be viewed online and printed at home, or you can request a packet of printed materials to be sent to you in the mail.
Gracias al Sr. y la Sra. Henry G. Cisneros por aportar fondos para estos folletos en memoria de Pauline Cisneros Polette. Estos folletos y piezas educativas traducidas por Andres Deik, MD, MSEd, están disponibles a pedido, sin costo, y son adecuados para el el público y profesionales de la salud. Pueden verlos en línea, imprimir en casa, o pueden solicitar el paquete de materiales por correo.
Salud Aliada
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.
Parálisis Supranuclear Progresiva: Algunas Respuestas
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.
La Degeneración Corticobasal: Algunas Respuestas
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.
Atrofia Multisistemica: Algunas Respuestas
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.
Clinical Trials
There are a number of clinical trials being undertaken at any given time that may present opportunity for patient participation. CurePSP will endeavor to keep this list as up to date as possible. Please click below to study and learn more about clinical trials and to find out if there are clinical trials currently being undertaken in your area.
Library
CurePSP is proud to present a collection of books written by community members on their experiences living with or caring for someone with a neurodegenerative disease. Please follow the link below to see the list of books. If you think we are missing some titles or would like to add your title to our collection, please email info@curepsp.org.
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.
Click here for Talking with Your Doctor