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Letter from the Executive Director

Robin ElliottDear Friends:

In an article covering Parkinson’s Awareness Month (page 10) in this issue of PDF News & Review, our editors record how volunteers around the country “made a difference” in diverse ways during April. But in a sense, this entire newsletter is a chronicle of how all of us — scientists, businesses, not-for-profits, research advocates and volunteers — can “make a difference,” in different ways.

Take for example the lead article by Dr. Christopher Goetz (page 1), neurologist and Chair of PDF’s Medical Policy Committee, whose work has documented that the placebo effect is stronger in Parkinson’s studies than it is in the studies of most other disease areas. He offers suggestions as to ways we can minimize this effect, so we can get a clearer picture of whether a new drug works.

Over in Australia, Dr. Paul Lockhart, who received PDF funding for genetic studies early in his career, is making a difference by digging for genes that are linked to Parkinson’s (page 3). He and his colleagues have identified “gene X.” Dr. Lockhart hopes that his new work on this gene, for which he has received an additional award from PDF, will help determine why the brain cells that generate dopamine are lost in PD.

The “different ways of making a difference” are also evident in PDF’s research portfolio (page 4). A significant portion of our investment ($2.4 million) is in the long-term support of research centers, where teams of scientists collaborate on studies across a broad area of Parkinson’s research. Another significant portion ($1.2 million) supports individual, established scientists who are pursuing innovative ideas to help us understand and treat Parkinson’s. A third piece ($1.4 million) supports brilliant young scientists and clinicians who are training for leadership positions in the field of movement disorders or in research.  And a fourth ($200,000) supports scientists who get together to solve problems that will speed new treatments to people with Parkinson’s.

Diverse as these research stratagems appear, they have three characteristics in common. One, they are all focused on solving Parkinson’s, or easing its burdens. Two, they bubble up, “bottom up,” from the ideas of the scientists themselves, rather than being imposed, “top down,” by PDF.

And three, they hold the promise of “making a difference.”  Of course the ultimate difference is between a world weighed down with the burden of Parkinson’s, which affects as many as one million people in the United States and seven to 10 million around the globe, and a world that is free of it. Making this difference is our goal, and our grail.

Robin Anthony Elliott
Executive Director