What Makes Us Distinctive? The PDF Way: A Letter from the Executive Director, Winter 2013

What makes PDF distinctive? 

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.

The Good, the Bad and the Ugly: Science Reporting in Parkinson’s

Will eating berries lessen your risk of Parkinson’s? What about coffee? What’s the real story on coconut oil? Is deep brain stimulation a miracle surgery?

All of us, whether or not we live Parkinson’s, are faced each day with a barrage of headlines about what might help or harm our health.

After such headlines appear, PDF often receives an influx of inquiries asking:

• Does this new drug/therapy/compound help Parkinson’s?
• Is this new drug a cure? 
• When will this new breakthrough be available?

The Good News
Scientists all over the world are conducting research into Parkinson’s. They are publishing their work in scientific journals and discussing it at meetings, and the media is reporting on it. This means that people touched by Parkinson’s disease have the chance to access the latest information about the disease online. According to this weekend's edition of the New York Times, which references studies by the Pew Research Center, people who aren’t connected to the Internet may actually be missing out on valuable health-related information!

The Bad and the Ugly
Not all sources report responsibly to you. Whether a source uses a sensationalistic headline, or leaves out important facts, they don’t always tell the real story.  For example, a story might report on deep brain stimulation as a helpful treatment, without communicating that the surgery does not stop disease progression. Another might report that smoking is associated with a lesser risk of developing Parkinson's, without telling you that picking up the habit isn't a good idea because more research is needed to understand why.

What Does It Mean?
So if you’re reading these headlines at home, how do you discern between fact and fiction? 

At PDF, part of our job is making sure you have quality information.  One initiative we developed last year was to include a "What Does it Mean?" component to the 50 or so scientific studies we cover each year. At the end of each report we ask “What Does it Mean?” and with the help of medical reviewers, science writers and research staff, we give you our best answer.

Sometimes we tell you that a drug could be available in the next five years. Other times, we let you know that a study was unsuccessful but is valuable for our understanding of Parkinson’s overall. Either way, we try to tell you the truth about how the science might impact your life with PD.

Other Strategies

Here are a few other strategies for assessing health information you find online:

• Ask Your Doctor: If you are seeing a Parkinson’s specialist, they should be very aware of the latest research and be able to explain how it applies to you.
• Evaluate Your Source: Where are you finding your information? Pay attention to who is publishing the information and when they published it. A few years ago, PDF published this article in our newsletter, with tips for evaluating whether a certain website is trustworthy. The Internet has changed, but these tips still apply.
• Call our HelpLine: PDF’s HelpLine is available at (800) 457-6676 or email at info@pdf.org from Monday to Friday, 9:00 AM to 5:00 PM to answer your specific questions about PD or specific news items you read.
• Watch Our PD ExpertBriefings: PDF’s online seminars, including this year’s live series and more than 30 recorded seminars, are led by some of the most trusted experts in the field. Need information on exercise? Find it here. Want to know about experimental medications? We have that too.

What About You?

What's your impression of Parkinson's science in the media? Do you find reporting responsible? Are you confused by the headlines or do you find them clear?

What can PDF to bring you the best information about Parkinson’s disease and the latest scientific findings?

P.S. Click here to see PDF's latest science headlines and scroll down in each one to see our answer to "what does it mean?"

Understanding the Progression of Parkinson's

Can you predict the progression of Parkinson's? ... or change its course?

Last Tuesday, during PDF's PD ExpertBriefing, "Understanding the Progression of Parkinson's," presenter Dr. Ron Pfeiffer had a few suggestions:

• Dr. Pfeiffer provided facts about PD progression - about the percentage of people with PD who develop certain symptoms or leave their jobs after a certain number of years - but also emphasized that these are general facts.  Each person's journey with Parkinson's is very different.
• He noted that there are no treatments proven to reverse PD, but he also emphasized there are actions people can take, such as exercising and joining support groups, that may improve life with PD. (In fact, there is extensive research into exercise right now.)

He also stressed that the picture of Parkinson's he painted during his presentation ... is how the progression Parkinson's looks now.  It's not necessarily the picture of PD in five, 10 or 15 years.  So how can we change it as quickly as possible?  Here's are some suggestions from PDF:

1. Advocate for PD Research: There may not be a cure for Parkinson’s, but you can be a part of the solution.  Join more than 150 PDF Research Advocates who are speeding the development of new treatments through the Parkinson’s Advocates in Research program.  In the Midwest?  We'll announce dates for our in-person three-day training in your region later this month and invite you to apply.  Don't have the time to commit to being a PDF Research Advocate or don't see a training nearby you right now? Take our four-part online course (available in mid-July) to advance your knowledge, and work with our Research Advocates in speeding new treatments. 
2. Inform Others About Parkinson’s: Parkinson's disease is not well understood.  Spread the word in your community and bring the latest educational information to families touched by Parkinson’s.  Browse PDF’s Awareness Toolkit to find tips for raising awareness that work for you, whether writing a letter to the editor or setting up a display in your library.
3. Fundraise for Research: PDF just announced $5.3 million in funding for Parkinson's research. We were only able to do so because of your support.   Support a PD organization, or join PDF Champions, the inspiring individuals who are raising funds for PDF’s programs, to improve the lives and futures of people touched by Parkinson’s.  Whether you run a lemonade stand that raises $20 or a golf tournaments that raises $50,000, you help to move the cause forward.

These are our ideas. What do you do individually to take charge of your Parkinson's?  What ideas do you have for the community to make progress now?

What's On Your Wishlist? Seeking Your Feedback for our Educational Programs

What is the one topic you wish PDF's educational programs would cover about Parkinson's disease?

... medications?

... nutrition?

.... exercise?

We hope you tell us by taking our very short (promise - it's just four questions) survey.

You may already know that PDF regularly hosts online seminars, or PD ExpertBriefings, along with a host of other educational programs.  Available live (both online and by phone) and recorded (both online and as DVDs), they are some of our most popular programs.

But we want to make sure we're covering the topics that are relevant to your life with Parkinson's.  So we're asking you to rank several topics and then tell us about any others we left out.  Please, if you have just a few minutes today, make your voice heard.


You tell us what you need our programs to cover. --> We'll do our best to deliver.

Take Survey Now

(PS: To get a sense of past and future topics, browse our past online seminars and sign up for those upcoming online seminars.)