Excited. Filled with Anticipation. Overwhelmed, in a good way. And to think it all started close to four months ago, in June. That is when my husband John and I decided to attend the World Parkinson’s Congress 2013. Given the fact that it only happens once every three years, it’s the single largest worldwide gathering of all stakeholders in the Parkinson’s field, and we missed it the last go around — we weren’t going to let that happen again.
From Linda Morgan, M.B.A., R.Ph., member People with Parkinson’s Advisory Council I arrived early in Montreal for the 3rd World Parkinson Congress, which will officially start on Tuesday. I came in early to be part of an ‘historic’ dinner and meeting between researchers from the Parkinson Study Group (PSG) and those of us involved with Parkinson’s Advocates in Research (PAIR).
When opening the Sunday Review section of the New York Times this past weekend, I did a double-take as a topic of much discussion here at PDF was featured front and center – trumping commentary on the state of the economy, international relations and the latest political debate. “Do Clinical Trials Work?,” by Clifton Leaf serves as a primer on some of the key issues that prevail within the clinical research enterprise – the tension between scientific inquiry and patient priorities; the odds that study sponsors take when betting on the success of a potential therapy; and the disconnect between those who… Read More
Just a few weeks ago, the Parkinson’s Disease Foundation’s grants review committee – comprising scientists and patient advocates – took on the task of deciding which of the 200 research grant applications we received would be approved for funding. PDF had the resources to fund only 10 worthy projects. Researchers working on innovative, viable projects continually face the challenge of limited available funding. And funders, such as government agencies and foundations like PDF, have to make difficult choices based on available resources. How can PDF meet the challenge to find sufficient funds to support the most promising research in tough economic… Read More
Yesterday kicked off an exciting and intensive two-day gathering of researchers, health care providers, administrators, patient organizations, people with Parkinson’s and care partners on Long Island, NY. We gathered for the 2013 Merinoff Symposium, “Leveraging Telemedicine to Deliver the Highest Quality of Care to All Parkinson’s Patients,” hosted by the Feinstein Institute for Medical Research at North Shore–LIJ Health System and co-hosted by PDF, other national Parkinson’s organizations and telemedicine organizations.
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.