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.
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.
PSP: Some Answers
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.
CBD: Some Answers
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.
MSA: Some Answers
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.
CTE: Some Answers
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.
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 Tissue Donation Program
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.
CurePSP Allied Health Brochure
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.
Prime of Life Brain Diseases
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.
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.
‘A Family’s Story’ video series
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.
Prime of Life Diseases video series
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.
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.
Brief Descriptions for PSP, CBD, and MSA
This short brochure, brief descriptions for PSP, CBD, and MSA, outlines PSP, CBD, and MSA with general layperson descriptions.
General Information
This General Information short brochure outlines CurePSP’s mission of care, Consciousness, and Cure.
Your Mission of Hope
This comprehensive training manual is a step-by-step guide to facilitating your own support group, as part of our volunteer training program.
Have You Been Diagnosed with PSP, CBD, or MSA?
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.
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.
Scientific American
This article in the esteemed Scientific American explains why PSP is being targeted for research into curing Alzheimer’s Disease.
CurePSP Funding Brochure
The CurePSP funding brochure outlines the many ways you can get involved in the research into treatments and a cure for PSP.
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.
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.
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.
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.
Useful Links
National Institute of Neurological Disorders and Stroke 
National Organization for Rare Disorders 
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
American Occupational Therapy Association
American Physical Therapy Association
American Speech-Language Hearing Association
LVST Global (specialized speech therapy, “LOUD”, and physical/occupational therapy, “BIG”, for movement disorders)
Parkinson’s Voice Project (specialized speech therapy, “SPEAK OUT!” and “The LOUD Crowd”)
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
American Massage Therapy Association
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
National Society of Genetic Counselling: The Find a Genetic Counselor directory offers access to over 3,300 genetic counselors (US and Canada). Check with your insurance company to verify coverage of genetic counseling, testing and authorized providers. For more information, visit AboutGeneticCounselors.com.
Please read this article if you consider a genetic test through the company 23andMe: Before you send your spit to 23andMe, what you need to know.
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
National Highway Traffic Safety Administration
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
National Institute of Aging: Caregiving. Learn how you can be an effective caregiver and how to take care of yourself.
National Institute of Aging: Planning for Long-Term Care. You can never know for sure if you will need long-term care. Maybe you will never need it. But an unexpected accident, illness, or injury can change your needs, sometimes suddenly. The best time to think about long-term care is before you need it. Planning for the possibility of long-term care gives you time to learn about services in your community and what they cost. It also allows you to make important decisions while you are still able.
Next Step in Care provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients. The information on this page is for reference and educational purposes. There is no substitute for seeing your doctor.
The Eldercare Locator is a public service of the U.S. Administration on Aging. This searchable website is a first step for finding local agencies, in every U.S. community that can help older persons and their families access home and community-based services like transportation, meals, home care, and caregiver support services. To speak to an Eldercare Locator information specialist call toll-free 1-800-677-1116 weekdays, 9:00 a.m. to 8:00 p.m. (ET). Spanish-speaking Information Specialists are on duty.
Care.com’s Senior Care Directory is free to anyone and everyone, and provides a comprehensive listing of resources by state in seven categories: housing resources, transportation resources, home care, end-of-life care, legal resources, financial planning and management, and health care.
Share The Care is a non-profit organization that provides information on how to organize a care group for someone who is seriously ill. In addition, their site provides links to other sites caregivers might find useful.
Well Spouse Association (WSA) is A 501(c)(3) non-profit, self-help, and volunteer-based organization whose mission is to provide peer emotional support and information to the husbands, wives and partners of the chronically ill and/or disabled. WSA is the only national organization which focuses exclusively on spousal caregivers. WSA offers local area support groups, mentors, respite weekends, an online forum, and more.
Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance.
Write your own will. Through CurePSP and FreeWill, you can create your legally binding will for free. Just follow this link, and follow the instructions. The service costs you nothing, whether you choose to leave a gift to CurePSP or not, and your will is valid in all 50 states. Even if you plan to consult an attorney about your estate, you can use FreeWill ahead of time to organize your intentions before meeting with her or him.
Watch this video from one of our family conferences to learn more about legal implications of living with PSP, CBD, MSA, or related diseases on your life as a patient or caregiver: