In this Q&A, Anne Newbould, a care partner to her husband with PD, shares her experience being involved in the PDF Community Choice Research Award. Last year, when PDF launched the award by asking, “what is the most pressing question for scientists to solve in PD?” she answered: fatigue. Her research priority was selected from amongst hundreds of submissions. This week, to address the symptom she helped to identify, PDF is bringing together experts and advocates in Chicago, IL. Q. What motivated you to submit your research idea for PDF’s Community Choice Research Award? A. My husband of over 40 years, James, has… Read More
The recent ice bucket challenge that has raised awareness and funds for ALS has been a huge success. What may have been overshadowed by this success is the reporting of the first solid estimate of how many people in the United States live with ALS – 12,187. It may seem like a small number but it helps many – from families to policy makers – understand what we are up against in solving that disease. While the estimates of people living with Parkinson’s disease are much larger than for those with ALS, the fact of the matter is that our community does not exactly know the… Read More
The effort to cure diseases like Parkinson’s disease is on the minds of many people during this time of year. We are often traveling home to see loved ones where we learn about new diagnoses or new stages in the disease that they battle, or we are remembering those who bravely fought their battle with Parkinson’s, yet lost. It is understandable, therefore, why there is a push to fund only research that is the closest to bringing about a cure, so-called translational research.
What makes PDF distinctive? As you may remember from September’s post, I am now answering such questions in my introductory letter for the Parkinson’s Disease Foundation’s quarterly newsletters, and posting them on the PDF blog, so we can begin a conversation with you. In PDF’s recently published Winter 2013 issue, I discussed what makes us distinctive, what we call The PDF Way. How does it play out in our programs? The PDF Way In our research portfolio, The PDF Way means supporting the creative ideas brought to us by scientific teams and individuals — peer-reviewed and time-tested. We provide long-term support to… Read More
We all want better treatments for Parkinson’s. Tuesday’s announcement that one of PDF’s Research Centers – Rush University Medical Center, in Chicago, IL – received full accreditation from The Association for the Accreditation of Human Research Protection Programs, Inc. (AAHRPP) is another step in the right direction. Fewer than 200 institutions around the country are fully or partially accredited by AAHRPP. Before any new treatment, for PD or another condition, is approved it must first be tested in people – in clinical research studies – to ensure it is safe and effective. The AAHRPP accreditation means that Rush is following… Read More
Would you consider donating your brain for science? A few years ago, Diana Barnwell wrote an article, entitled, My Last Gift. She chronicled her decision to donate her brain … and the complicated issues that arose when making her decision. Studying actual human brains – donated by individuals upon their death, as a contribution to science – is a vital way to understanding neurological diseases such as Parkinson’s. After all, the brain is the only mysterious organ that we can’t study during a person’s lifetime. This is why it was so devastating to scientists around the world, particularly those at… Read More