Thursday, August 30, 2012

PAIRing up for Research: The Importance of Saying Thank You

Last week, we were excited to see a great example of pairing up (the slogan for our Parkinson's Advocates in Research, or "PAIR" program) at Vanderbilt University Medical Center (VUMC). In an article entitled, "Events honor early patients of novel Parkinson's study," VUMC reports on their study of deep brain stimulation surgery as a treatment for early stage Parkinson's. DBS is approved by the FDA as a treatment for mid stage Parkinson's, but not for those with earlier stage PD.

We were impressed to see how VUMC thanked their volunteers, all people with Parkinson's, who made the study possible. As the article notes, their 35 volunteers did an extraordinary thing by agreeing to either undergo surgery early on in their Parkinson's or to receive standard medicines. Each person also dedicated five separate weeks of their time over the course of two years.

As with all clinical studies, we only learned new lessons about PD because of those volunteers.

Will You "PAIR Up" for Parkinson's Research? 
This story rang true with PDF because VUMC's event reflects values similar to those that drive our PAIR program.  At PDF, we believe that people with PD must be primary partners in research­ as participants, but also in other capacities,­ in order for us to speed new treatments.

The importance of saying thank you is particularly key, because of findings such as those from a 2007 CISCRP survey which say that:
  • 79 percent percent of clinical study volunteers report that they never hear from the sponsor or research staff after a trial has concluded, and; 
  • 83 percent of volunteers say they are never told the results of their trial
Through PAIR, we are committed to changing this statistic and to ensuring that someone says thank you.  We are doing this in part through our signature PAIR Up for PD Research forums each April that - similar to VUMC -­ publicly thank people with Parkinson's disease who have volunteered for research studies.

    Courtesy of PDF Research Advocate Carolyn Weaver, made for her fellow Research Advocates.

Most of these forums are led by one of PDF's 180 Research Advocates (all of whom have completed one of our in-person PAIR Learning Institutes) in collaboration with local researchers.

PDF Research Advocate Bob Hankin at an April 2012 PAIR Up for PD Research Forum in New York, NY.

The thank you at the forum is usually a simple public recognition along with a small token from PDF (see first and last photos).  But it's an important step in ensuring people with PD are at the front and center of research.

We applaud VUMC's efforts to communicate with their volunteers and say thank you.  

What do you think about their efforts? Will you PAIR Up?

Visit our website to learn more about getting involved with PAIR, through our upcoming training for people with Parkinson's and care partners in Oak Brook, IL or our new online course.

Friday, August 10, 2012

PDF Champions Friday!

PDF wishes best of luck to PDF Champion Heidi Johnson and Evergreen Golf Club in Elkhorn, WI, on their Pars Fore Parkinson's golf tournament on Thursday, August 16.  They have set a fundraising goal of $4,000 with 100 percent of proceeds benefiting PDF! 

Pars Fore Parkinson's has been set up in honor of one of Evergreen Golf Club's rangers, who lives with Parkinson's disease. 

Spots are still available! If you live in the Eklhorn, WI area and are interested in playing a round of golf to support Parkinson's research, please contact Heidi at or (262) 949-3110.

Here are all the Pars Fore Parkinson's details:

Thursday, August 16

12:00 PM - Check In
1:00 PM - Shotgun Start

Evergreen Golf Club
N6246 US Highway 12
Elkhorn, WI 53121
(262) 723-5722

*The tournament is $75 per golfer and includes 18 holes of golf, cart, steak cookout dinner and hole & raffle prizes. 

Remember: The Cure Begins With YOU!

Wednesday, August 8, 2012

Celebrate CARNAVAL with PDF!

The date is set for CARNAVAL!

On Wednesday, November 14, PDF is hosting Carnaval at Slate in New York City. This Brazilian inspired fundraising event will feature DJ Brenda Black, Samba dancing, games of chance, a raffle, buffet dinner and premium open bar. Proceeds from the event will benefit Parkinson's research. 

PDF will also pay tribute to Peter Dorn, longtime member of PDF's Board of Directors, co-owner of the Copacabana Club and one of the creators of Carnaval, which has raised nearly $500,000 for Parkinson's research. PDF will honor Peter for his generosity and commitment to PDF's mission. 

Are you interested in becoming more involved with PDF? How about joining the Carnaval committee? This is a great opportunity to use your creative mind and make a difference! To learn more about becoming a committee member or about Carnaval in general please contact (800) 457-6676 or Tickets will be available for purchase in September. 

Remember: The Cure Begins With YOU!

Tuesday, August 7, 2012

Vascular parkinsonism

From James Beck, Ph.D., Director of Research Programs

Recently, former President George H.W. Bush revealed in an interview with PARADE Magazine that he has vascular parkinsonism.

While not meeting the criteria for true Parkinson’s disease (PD), vascular parkinsonism mimics many features of PD.  As its name implies, vascular parkinsonism is often due to problems with the vessels in the brain regions that control movement and small strokes are the primary cause.  Although small strokes will cumulatively worsen the symptoms of vascular parkinsonism, it is otherwise not considered a progressive neurodegenerative disease like PD.

People with vascular parkinsonism often experience a “lower body parkinsonism” and have trouble with walking and maintaining balance – much like people with classic Parkinson's.  President Bush reports that he experiences such symptoms.  Generally, people with vascular PD are less likely to have the tremor of Parkinson’s disease.

Because the cause of vascular parkinsonism is fundamentally different from true PD, people do not always respond well to the current Parkinson’s disease medications.

Like all people who struggle with a neurological disease, President Bush has many obstacles to overcome.  Because his disease can mimic true PD, his story emphasizes the importance of getting an accurate diagnosis from a movement disorders specialist in order to best manage one’s disease.  PDF maintains a nationwide list of movement disorder specialists and encourages you to call (800) 457-6676 or email us at to find one in your area.