Ms. Richardson will serve as the spokesperson for Rare Disease Day and participate in numerous television and radio interviews, a public service announcement, and other media activities.
Read Nancy Harvey's story about her father's battle with progressive supranuclear palsy.
CurePSP is pleased to announce its latest round of funding for researchers who are working toward unlocking the mysteries of PSP, CBD, MSA and other atypical Parkinsonian disorders.
The gift will be used to support innovative research grants as part of the new $15 million Research Road Map initiative, in addition to providing patient/caregiver support and educating healthcare professionals.
The UCSF Memory and Aging Center will host a free PSP and CBD research education event on February 8, 2014 from 8:30am - 12:30pm. View the event flyer for more details!
Rare Disease Day is February 28, 2014. There are a number of things you can do to support such an important day and let your voice be heard.
WELCOME TO CUREPSP
Progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA), are little-known but disabling brain diseases, sometimes called atypical Parkinsonian disorders. These rare neurodegenerative diseases are often misdiagnosed as Parkinson's disease, amyotrophic lateral sclerosis (ALS), or Alzheimer’s disease. PSP, CBD and MSA lead to progressive decline, and although symptomatic treatment exists, there is no known cause or cure.
The Foundation for PSP | CBD and Related Brain Diseases, better known as CurePSP, assists patients and their families in their struggle against these debilitating diseases, increases public awareness, educates healthcare professionals, and supports research toward better diagnosis, effective treatments, and eventual cures.
FOR THE CAUSE
There are a few easy ways to help raise money for CurePSP without even having to leave your computer! GoodSearch is a search engine toolbar that automatically raises money for CurePSP when you search for something on the internet. Every time you use it, CurePSP receives a small amount of funds. You can also buy and sell items on eBay and have a portion of the transaction donated to CurePSP. Get started on our online fundraising tools page!
You can also help CurePSP through vehicle donation - donate your car, boat, or other property to support our programs - learn more today!
Have you gotten your CurePSP wristband, yet? What about a CurePSP awareness ribbon magnet for your car? You can help create awareness about these rare brain diseases by ordering a wristband or ribbon magnet now!
BROADENING OUR REACH
We provide patients, caregivers, and families with access to a network of support. There are face-to-face support groups in many US states across the nation, with a few in Canada. We also coordinate online groups that meet via computer or telephone - all you have to do is call in. CurePSP also offers a large list of peer supporters who are willing to talk with people about their experiences with the diseases. Please take a moment to browse our support network.
CurePSP puts all the educational information it can find on its website and makes it available to the public free of charge. This includes information on the diseases for patients, caregivers, and even healthcare professionals. We also publish a bi-monthly newsletter that often features articles focusing on treatment options, research, and upcoming events. You can also view past issues.
Finding A Cure
Research is paramount in the quest to find a cure. Therefore, CurePSP devotes a large portion of its budget to research. There are often clinical trials and studies that are seeking patients who fit certain criteria. We provide a list of current research studies, as well as a way for visitors to search an active database of clinical trial information at clinicaltrials.gov.
Additionally, we host an international research symposium each year to facilitate the sharing of research findings across our grants program and the greater scientific community. Visit our research symposium page to learn more about the event.
Also, CurePSP funds the Eloise H. Troxel Memorial Brain Bank at the Mayo Clinic in Jacksonville, Florida, where patients can arrange to have their brains donated to science.