Tag Archives: parkinson’s advocates in research

PAIRing up for Research: The Importance of Saying Thank You

Last week, we were excited to see a great example of pairing up (the slogan for our Parkinson’s Advocates in Research, or “PAIR” program) at Vanderbilt University Medical Center (VUMC). In an article entitled, “Events honor early patients of novel Parkinson’s study,” VUMC reports on their study of deep brain stimulation surgery as a treatment for early stage Parkinson’s. DBS is approved by the FDA as a treatment for mid stage Parkinson’s, but not for those with earlier stage PD. We were impressed to see how VUMC thanked their volunteers, all people with Parkinson’s, who made the study possible. As… read more Read More

Understanding the Progression of Parkinson’s

Can you predict the progression of Parkinson’s? … or change its course? Last Tuesday, during PDF’s PD ExpertBriefing, “Understanding the Progression of Parkinson’s,” presenter Dr. Ron Pfeiffer had a few suggestions: Dr. Pfeiffer provided facts about PD progression – about the percentage of people with PD who develop certain symptoms or leave their jobs after a certain number of years – but also emphasized that these are general facts.  Each person’s journey with Parkinson’s is very different. He noted that there are no treatments proven to reverse PD, but he also emphasized there are actions people can take, such as… read more Read More

Protecting the People Who Test New Parkinson’s Treatments

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 Read More

PDF Champions Friday!

PDF CHAMPIONS FRIDAY Surprise… Happy 60th Birthday to Gary Chard from Wilmington, DE!  There is no better way to celebrate your birthday than with a surprise party thrown by family and friends – – while fundraising for PDF at the same time! At the beginning of the year, Gary’s wife Beth Ann came to PDF with the fantastic idea of turning Gary’s special ‘secret’ bash into a PDF Champions fundraising event http://www.pdf.org/en/pdf_champion. Gary was diagnosed with Parkinson’s disease in 2008 at the age of 56. Together Gary and Beth Ann have been extremely involved in the Parkinson’s community. Gary presents… read more Read More

Notes from a Day Spent Listening to Scientists Judging PDF Research Applications

Last Friday, March 16, was the occasion for reviewing applications for PDF’s International Research Grants program and Research Fellowships programs. Before us were some 30 proposals from some of the best young (and not-so-young) scientific investigators in the world. As I sat there in the meeting as an observer, listening to the members of our scientific review committee as they made their comments and pronounced their judgments, I found myself scribbling notes on what seemed to be the principles on which they were basing their decisions. What they were saying, it seemed to me, said a lot about how we… read more Read More

PDF Research Advocates in Action

Last week, Dr. Beck discussed the role of PDF Research Advocates in PDF’s grant review. As he said, “These people, PDF’s Research Advocates, part of the Parkinson’s Advocates in Research program, insure what we will fund is not just the best for science’s sake but for the sake of people too.” Wondering what exactly our PDF Research Advocates do? We want them to tell you in our own words. Last year, PDF was able to steal a few minutes from Research Advocates Becky and Tom, in the midst of grant review. They were kind enough to explain their work in… read more Read More