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 2018 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. The 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.
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.