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 Kelsey Woods at 443-578-5667 or woods@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. 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

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.

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.

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 Institutes of Health 

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. 

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. 

Griswold

 

Please note: CurePSP does not endorse or validate any information posted on these websites. We encourage consumers to proceed with care and vigilance. 

Compassionate Allowances for PSPCBD, and MSA

 

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. 

DynaVox / Mayer-Johnson

RESNA 

Luminaud

Saltillo

 

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.