The latest issue includes an article about the Shepherd Center in Atlanta, volunteer spotlights, healing through art therapy, a family conferences update, personal stories by families of patients, a list of new support groups, as well as upcoming conferences and special events.
Finding genetic causes of progressive supranuclear palsy (PSP) is the goal of a joint research project announced today between Cypher Genomics and the University of Pennsylvania. The research is funded by a grant from CurePSP.
Our next family conference will be held on June 13, 2015 from 8:30am-4pm at the Southway Hotel in Ottawa, Ontario. Topics will include PSP/CBD/MSA research, Q&A with neurologists, practical management of symptoms, cognitive and psychological challenges, and maximizing support systems. Space is limited - register today!
On Thursday, April 16, the original members of Jeff Golub’s Low Profile and Avenue Blue bands gathered at The Bitter End in NYC to celebrate the great guitarist, who passed away this New Year’s Day of complications from PSP. Between ticket sales and auctions, the event raised more than $2,600 for PSP research!
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 sign up for Goodsearch and Ziggedy. Goodsearch is a search engine (powered by Yahoo!) that generates donations every time you use it. With Ziggedy, every time you shop online with thousands of potential retailers, you'll automatically generate funds for CurePSP without any cost to you. You can also 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.