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How Does PDF's Work Pay Off?
From the Desk of PDF's Executive Director
Robin A. Elliott
As we begin another year of funding some of the best Parkinson's science and providing top-notch educational materials and services, we know how important it is for our readers to understand just how we are working to win the fight against this disease. In this letter, I give a brief account of what we have done in the past year, and our goals for the next.
What we do with each dollar
Our mission at PDF comprises three main tasks, to each of which we allocate a portion of the dollars that our donors generously contribute.
The first task is to advance the understanding of Parkinson's by supporting scientific research of the highest caliber. Of each dollar given to PDF, this component of our mission takes the largest share - about 60 cents of each dollar we receive in gifts. A large portion of this goes to support Parkinson's and related research at Columbia University, a pioneer in Parkinson's research since the 1950s and to this day one of the premier institutions in this field. Another significant portion of our research budget goes to support the work of Rush University Medical Center in Chicago, a leading center of clinical research on Parkinson's. Yet another portion underwrites a group of hugely talented young scientists who compete for awards through our International Research Grants Program. The 23 scientists to whom we granted funding in 2006 - from a pool of 133 applicants! - were simply outstanding.
Our second task, which takes an additional 14 cents of the donor's dollar, is to provide education and support to people with Parkinson's and their families, and to the professionals who serve them. Over the past year we have completed a renovation and updating of our portfolio of educational materials, including a widely-hailed video/print package designed to support people who are newly diagnosed with Parkinson's. Call PDF today to get your free copy!
Our third task, which takes about six cents of each dollar, we call "advocacy" - that is, championing the interests of the Parkinson's community with various external organizations and entities that affect the lives of people with Parkinson's. These include the federal government (we do this primarily through the financial support we give each year to the Washington-based Parkinson's Action Network); the news media; and pharmaceutical and biotechnology companies.
The balance of each donated dollar - 20 cents - goes for management and fundraising. We try to keep these costs as low as possible but as the saying goes, you need to spend money to earn money; accordingly, much of our expense in this area, for better or worse, is unavoidable.
How close are we to beating Parkinson's?
A decade ago, Parkinson's was virtually invisible in the wider community; federal funding of research was pitifully small; few doctors and other medical personnel really understood the condition; and people who lived with it were pretty much limited to one treatment, levodopa.
In just a few years, the scene has become transformed. Public awareness of Parkinson's, fueled by the celebrity of people like Muhammad Ali and Michael J. Fox, shot up. While this new-found publicity was going on, research into the causes and potential cures for Parkinson's became vastly increased, fed by a ten-fold growth in federal funding. Parallel developments in the investment by industry yielded no fewer than four new medications in as many years. In addition, a new and much more effective surgical technique (deep brain stimulation) for Parkinson's was introduced, offering a much better quality of life for tens of thousands of people who live with Parkinson's disease.
Yes, things are better, but they are simply not good enough. The reality is that people can live with Parkinson's much better than they could beforeÖbut they cannot yet enjoy the gift of living without it. This remains unacceptable. For as long as this continues, the people at PDF, along with scientists, healthcare professionals and educators whose work we support, will get up every morning with determination to take one more step, win one more battle, for our community.
Resolving another new year of action
We are proud to have contributed to the advances of recent years but this is no time to rest. At PDF, our "to do" list for this year is already overflowing. Among the highpoints are, of course, overseeing our Center Grants that provide millions of dollars to fund high-priority research. We have also set a goal to double the number of Parkinson's patients who are considering participation in clinical trials through PDtrials, the community initiative we describe on page 1. Another of our key initiatives is to dramatically improve the ways in which we reach our community through an expanded program, the Parkinson's Information Service (PINS). This program will include expanding our line of educational materials for patients, families and professionals; and assuring quicker response time to inquiries and requests.
We have much to do. All that we accomplished last year was because of people like you who have demonstrated confidence in our work. All that we accomplish in the coming year will be made possible by that same power and passion. Thank you, and be sure to write or call us if you would like to discuss our work, or share your opinions.