As you may remember from September's post, I am now answering such questions in my introductory letter for the Parkinson's Disease Foundation's quarterly newsletters, and posting them on the PDF blog, so we can begin a conversation with you.
In PDF's recently published Winter 2013 issue, I discussed what makes us distinctive, what we call The PDF Way. How does it play out in our programs?
The PDF Way
In our research portfolio, The PDF Way means supporting the creative ideas brought to us by scientific teams and individuals — peer-reviewed and time-tested. We provide long-term support to research teams at major universities; we award short-term research grants to individual investigators; and we help to solve specific research challenges through the staging of meetings among experts. (For a profile of one such scientist, see this issue's "Spotlight on Research".)In our educational initiatives, The PDF Way makes creative use of technology to bring authoritative, relevant information to our target audiences. This includes running PD ExpertBriefings, a series of educational webinars for people with Parkinson's and their families, now in its fourth year; and providing online professional education for nurses, physical therapists and other "first responders" to the needs of people with Parkinson's. (For a list of upcoming PD ExpertBriefings, see page 7 or browse our website here.)
In our advocacy programs, The PDF Way means harnessing the energies of individuals and families with Parkinson's. The most striking example of this is the signature program we call Parkinson's Advocates in Research (PAIR), in which we deploy lay advocates to play leadership roles in research. (For examples of how these advocates work, see photographs on page 10, also featured here.)
In all of these activities, we make certain pledges to our community.
- To our donors, we promise accountability and efficiency. (For the fifth consecutive year, we boast both the four-star (highest) rating of Charity Navigator, the respected charity watchdog group, and the premier seal of approval of the Better Business Bureau.)
- To people with Parkinson's, we promise a place at the very center of our operations — whether through our People with Parkinson's Advisory Council (PPAC), through PAIR (see above), or in the way we consult the community in the design and execution of each and every program and service.
- And to our colleague organizations, we pledge collaboration — both to provide better service to people who are affected by PD, and to minimize duplication of effort.
Your Part in The PDF Way
An important part of The PDF Way is you. So in 2013, we invite you to be a part of it - whether by providing feedback on the PDF blog, joining a PD ExpertBriefing, or becoming part of Parkinson's Advocates in Research.
How would you like to be involved? What should PDF keep in mind in building our programs in 2013?
Together, we can expedite PDF's mission to improve the lives and futures of people touched by Parkinson's.
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1 comment:
Just a request from an individual for a new area of research: Non-human animals don't get Parkinson's. Why? I have not been able to find any literature in which a Parkinson's researcher hypothesizes the answer to this question. Apparently, non-human animals either have some physiology that humans don't have, or the opposite is true. If that question could be answered by a team of professional physiologists, it would be a major step toward a drug target and a cure for Parkinson's. It truly would be Nobel Prize quality research. If you have access to literature where somone has tried to answer this question, please send it to me. Otherwise, I would like to suggest that such a project be funded. I have made the suggestion to Dr. Beck, and he has promised to try to get an answer. I ask for your support in this endeavor.
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