By Peggy Willocks, member, PDF People with Parkinson’s Advisory Council April is Parkinson’s Awareness Month. And it won’t be newsworthy that I came all the way from Tennessee to New York to participate in this past Saturday’s Parkinson’s Unity Walk, where about 10,000 people with Parkinson’s, friends and family “walked” through Central Park as a symbolic gesture to raise funding for research. As a member of the Parkinson’s Disease Foundation’s (PDF) Advisory Council, it isn’t newsworthy that I am also here as a voice of the patient in helping to have better and faster approval of therapies for the debilitating… Read More
Have you ever been part of a Parkinson’s research study? This Parkinson’s Awareness Month, PDF says thank you for helping to bring about better treatments at a faster pace. After all, the only way that new treatments and a cure for Parkinson’s can be found is by ordinary people taking the extraordinary step of volunteering in studies.
Two Saturdays ago, in a Washington DC hotel, PDF pulled off an interesting little coup in its long-term bid to bring people with Parkinson’s (and other neurological disorders) into the center of conversations about the process of clinical research and drug development. The occasion was the plenary session on the last day of the annual scientific conference of the American Society for Experimental Neurotherapeutics (ASENT), and the title of the session was: New Models for Collaboration: Patients as Drivers and Partners in Neurological Research. I have served on the Board of Directors of this very worthwhile organization for three years… Read More
Last month, the Parkinson’s community lost a dear member, one who dedicated his career to the treatment of the disease. William J. “Bill” Weiner, M.D., known to many at the University of Maryland where he served as Chairman of Neurology and the Director of the Maryland Parkinson’s Disease and Movement Disorders Center, passed away on December 29, 2012. Involved in treatment trials for Parkinson’s disease since levodopa in the 1960s, Bill was truly one of a kind in his profession – a fine scientist and a dedicated clinician who was committed to thinking for himself and to expressing his views… Read More
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
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