Friday, January 8, 2010

Reflections on PDF's Top Ten List

Over the New Year’s holiday, I found myself reflecting on the Top Ten of 2009 – accomplishments of the Parkinson’s Disease Foundation that we thought worthy of sharing with our supporters and friends. (You can find this list on our website.)

I was happy to see that for almost every item in the “Top Ten,” the people who live with Parkinson’s – along with their loved ones, friends and health professionals – are front and center. Whether it’s a research project, a new educational program or an advocacy initiative, it is this perspective that keeps our work going.

The roles of people with Parkinson’s in PDF’s work are varied. Here are some of them – each one followed by a reference to the item(s) in the Top Ten that illustrates it.

  • Wise Advisors – Item #8 on the “Top Ten” list reflects the crucial role of PDF’s People With Parkinson’s Advisory Council –a group of 13 people who advise PDF on all of its programs and whose discussions led to the development of our now most popular resource, the Parkinson’s Disease Resource List. Item #9 illustrates that it is not just the 13 voices of PPAC, but also those of the wider Parkinson's community, that have influenced PDF's programs. Over the years, many people reported to PDF about the overwhelming medical costs associated with Parkinson’s, so we responded by developing a new financial assistance program, run in collaboration with the Melvin Weinstein Parkinson’s Foundation. This program is just a small step toward addressing this need.

  • Informed Consumers of Medical and Scientific Information – Items #5,#6 and #7 reflect that it is the community’s feedback on PDF’s online educational programs and publications, received via our national HelpLine (800-457-6676), that guide PDF in its decisions to develop new and relevant initiatives for the community. This keeps us “on point.”

  • Crucial Cogs in the Research Wheel – Item #4 reports on the Second Clinical Research Learning Institute, in which people with PD are prepared to play leadership roles in raising awareness of clinical trials. You may see these advocates in your area, as they make their way across the country to raise awareness. As one graduate said, “Nobody is in a better position than a person with Parkinson’s to empower another person with PD and to strengthen his or her belief in the role that clinical research can play in finding treatments and a cure for PD.”

  • Private Philanthropists – Items # 1 and #2 demonstrate that for every research initiative that is funded by PDF – from our regular research and Fellowship programs, to the one-time bridge grants we provided last year to several scientists whose funding was summarily terminated with the collapse of a foundation on which they had depended - every cent comes from private individuals and family foundations. Most of these folks have direct personal connections with the disease. And to all of them, we say a hearty thank you!

Of course, we can’t implement every program that’s suggested to us, but we are doing our best to ‘listen in’ and respond accordingly. We have only been able to do so with the help and feedback of those working with us.

So, here’s to the heroes of our community: the women and men who live with Parkinson’s and the loved ones who are also impacted by this disease. PDF wishes you all a good 2010 – as measured in terms of the progress we all make toward solving Parkinson’s and providing support to those who live with it so courageously. We promise to continue on in 2010 toward our goals and look forward to your feedback and participation as we do so.

Robin Elliott

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