Patient Resources

A key part of CurePSP’s mission of care, consciousness, and cure is to provide all relevant, up-to-date information on prime of life brain diseases. These resources are for patients, families, and friends seeking to educate themselves, and others, about the causes, symptoms, trajectory, treatments, and management of these diseases. This information is sourced from credible peer-reviewed scientific sources only, and is updated as breakthroughs in our understanding of these diseases occur.

The CurePSP Guidebook

We are proud to bring you the 2020 CurePSP Guidebook. This signature publication features 150 pages of the latest information on PSP, CBD, and MSA and is the perfect reference for patients, family, carepartners, and health professionals. Our 2020 version is exclusively available online.

Click here for the 2020 CurePSP Guidebook

A copy of our printed 2020 Guidebook is available for a suggested donation of $20 at this page, or contact Alisa Hansen at 443-578-5670 or donations@curepsp.org.

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. 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. Click on the images to find the online version to read, download or print.

Request Information Packet

These brochures would not be available if not for the support of our donors, please consider making a gift to ensure publications continue in future.

	The PSP: Some Answers brochure is compiled by CurePSP board member and PSP expert, Dr. Larry Golbe. To view the brochure, click on the image to the left.		The CBD: Some Answers brochure is compiled by CurePSP board member and CBD expert, Dr. Larry Golbe. To view the brochure, click on the image to the left.
	The MSA: Some Answers brochure is an eleven page booklet compiled by CurePSP board member and MSA expert, Dr. Larry Golbe. To view the brochure, click on the image to the left.		CurePSP supports the Mayo Clinic brain bank by financially assisting brain donations. The Mayo Clinic performs autopsies which can provide a sure and final diagnosis of the deceased.
	This book is specifically for healthcare professionals, and outlines the various treatments available for symptoms of prime of life brain diseases. If your physician isn’t aware of PSP, ask us to send them this book.		This book is our introduction to people unfamiliar with prime of life brain disease. From a real life story, to the tau protein, to research into treatment and a cure, this brochure tells CurePSP’s story.
	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.		CurePSP has produced the ‘A Family’s Story’ video series, telling the story of families dealing with diagnosis of PSP, CBD, FTD, and MSA. Available in the Request for Information package or singly.
	This video is a presentation by respected neurologist and CurePSP associate Dr. Stephen Reich. In the hour-long video, Dr. Riech explains the pathology and symptoms of the prime of life brain disorders.		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.
	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.		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.
	This short brochure outlines PSP, CBD, and MSA with general layperson descriptions.		This short brochure outlines CurePSP’s mission of care, Consciousness, and Cure.
	This comprehensive training manual is a step-by-step guide to facilitating your own support group, as part of our volunteer training program.		This short brochure is designed to be left at clinics promoting the value of support groups, with space at the back for your own support group details.
	The PSP Connection Newsletter features the progress CurePSP is making on its mission of care, consciousness, and cure. Available by mail or free download.		This article in the esteemed Scientific American explains why PSP is being targeted for research into curing Alzheimer’s Disease.
	The CurePSP Carepartner Guidebook outlines managing care and getting professional support, being a Carepartner, making plans, and Carepartners’ perspectives and pointers.		The CurePSP funding brochure outlines the many ways you can get involved in the research into treatments and a cure for PSP.
	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.		The CTE: Some Answers brochure is an eight page booklet compiled by CurePSP board member and CTE expert, Dr. Robert A. Stern. To view the brochure, click on the image to the left.

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.

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.

	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.		The purpose of this CurePSP pamphlet, Understanding the Use of Psychotropic Medications, 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.
	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.		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.

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. Click on the images to find the online version to read, download or print.

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. Haga clic en las imágenes para encontrar la versión en línea para leer, descargar o imprimir.

	Este libro es específicamente 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 de 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.

Further Patient Resources

UNDERSTANDING PALLIATIVE AND HOSPICE CARE published by Diane Breslow, MSW, LCSW

UNDERSTANDING ADVANCE HEALTHCARE PLANNING published by Diane Breslow, MSW, LCSW

UNDERSTANDING LEVELS OF HOME AND COMMUNITY-BASED SERVICES AND RESIDENTIAL CARE published by Diane Breslow, MSW, LCSW

FACING LOSS AND THE END OF YOUR CAREGIVER ROLE published by Diane Breslow, MSW, LCSW

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.

Books on PSP

CurePSP has accumulated a collection of books over the years, written from varying points of view: people with PSP, people caring for spouses with PSP, even a book written for toddlers to understand the effects of PSP on their family member. Please follow the link below to see the list of books. If you think we are missing some titles, please email info@curepsp.org.

Network of Support

CurePSP has a dedicated network of volunteers who have experience with PSP and related diseases and a commitment to help those who are now suffering. These volunteers are located in most parts of the country and in some international locations. They facilitate in-person groups and online gatherings as well as providing telephone support. We urge patients, families, and carepartners to take advantage of this unique resource offered by CurePSP.

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

The FTD Disorders Registry

The Registry is an online database to collect information from those affected by all types PSP, CBD, and related diseases. Persons diagnosed, (current/former) caregivers, family, and friends can join. As a member of the Registry, you can help us advance the science and move faster toward finding treatments and cures. Join the registry here. 

Brain Donation

The brain bank at the Mayo Clinic in Jacksonville, Florida, supported by CurePSP, provides an invaluable resource to investigators by providing tissue samples for their research. It also provides a postmortem confirmation of diagnosis to families of the deceased. CurePSP reimburses families for the costs of brain donation.