CurePSP's next family conference will be held on February 7, 2015 at the Best Western Gateway Grand in Gainesville, Florida. We hope to see you there!
NORD's Summit will be held October 21-22, 2014 in Alexandria, Virginia, where top leaders from the FDA, NIH, industry, patient groups, and research institutions will meet to address important rare disease topics.
A clinical trial for TPI-287, an intravenously-infused compound designed to compensate for loss of tau function in PSP and CBD, is currently recruiting participants.
This free webinar by the National Parkinson Foundation on Oct. 8 at 1pm ET will discuss how Parkinson's can affect the way we think and act, as well as what is normal, what is not, and what to do about it.
Northera (droxidopa), a drug used to treat symptomatic neurogenic orthostatic hypotension (NOH), which is a common symptom of MSA, will be available for prescription in the United States.
The ADDF will host its 15th International Conference on Alzheimer's Drug Discovery on September 8-9, 2014 in Jersey City, NJ.
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! Take a minute and switch your search engine from Google, AOL, MSN, etc. to GoodSearch. GoodSearch is a search engine toolbar that automatically raises money for CurePSP every time you surf the internet. Each time you use it, CurePSP receives a donation. And don’t forget to do your online shopping using the AmazonSmile program. Get started on our online fundraising tools page!
Have you gotten your CurePSP wristband or Hope bracelet yet? What about a CurePSP custom “I Hate PSP” t-shirt or an awareness ribbon magnet for your car? These gestures help create awareness about these rare neurodegenerative diseases, order yours today!
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 and also encourage visitors to search the clinicaltrials.gov website. For extra reading about current research, we recommend the PSP Blog and Registry authored by Lawrence Golbe, MD.
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.
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.