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My Reflections on PDF’s 50th Anniversary Educational Symposium
By Ann Wasson
On the evening of October 10, as my husband Greg and I arrived in New York City, we were not even two steps inside our hotel in the city’s historic South Street Seaport, when PDF’s 50th Anniversary Educational symposium unofficially began.
First, we ran into two long-time friends with Parkinson’s disease (PD) who we rarely see except at conferences and we arranged to meet them for dinner. After we had checked in and were heading off to the restaurant, our friend recognized Dr. James Surmeier, a Parkinson’s scientist who is on the faculty at Northwestern University. She introduced us and we spent the next half-hour standing on the street corner discussing Dr. Surmeier’s research about Parkinson’s. He seemed pleased to find “patients” who were not only eager for information, but also knowledgeable enough to have a meaningful discussion about his work.
As we were standing there, Dr. J. William Langston, the Founder and CEO of The Parkinson’s Institute in Sunnyvale, CA, arrived at the hotel. We greeted him and agreed to try to find time to catch up on the progress of the California Registry program (a state wide registry that will be collecting data on Californians living with Parkinson’s disease).
The next morning, as the conference officially began, we joined top neurologists, scientists, and researchers to talk over muffins and corn flakes.
These instances of casual contact may not seem like much, but they are, in fact, almost unheard of at scientific conferences, where “patients” and “doctors” are normally separated not only by a podium and microphone, but also by independent hotel accommodations, seating assignments, and even entrances and exits. Throughout the PDF symposium, time and circumstances were created to foster contact.
The symposium was organized mostly along two parallel tracks, one aimed at a research level audience and the other at a broader audience. Attendees were encouraged to cross over from one to the other as their interests led them. Personally, I didn’t understand everything in the basic science sessions, but I could follow the overall concepts, discussion, and passion of the presentations and sense their potential impact upon how my disease is both measured and treated.
The clinical and quality of life sessions were equally exciting. Topics that were once rarely discussed in conference programs and at doctors’ offices (though not so new to many people with Parkinson’s) — such as depression, sleep, pain disorders, driving, and exercise — were center stage at the symposium, presented clinically and scientifically by doctors and other health professionals.
The community interaction continued through two special meals. An innovative luncheon program on Day Two was built around hosted tables, each with a designated expert leading discussion on a PD-related topic of interest, such as exercise or living alone with PD. The conversations were wildly successful.
The other event was the awards dinner that concluded Day One, recognizing, among others, the wonderful Rhona Johnson of Greenwich, CT, who was selected by PDF’s People with Parkinson’s Advisory Committee (of which I am a co-chair) to receive the Leadership in Caregiving Award. The dinner evolved into a Who’s Who of movement disorders, beginning with Advancement of Parkinson’s Science Award winners Drs. Alim-Louis Benabid and Mahlon DeLong and ending with Dr. Bill Langston presenting the James Parkinson Medal to Dr. Stanley Fahn. Because we were staying at the same hotel, I was able to personally congratulate Dr. Fahn as we rode up in the elevator later that night.
The symposium was an unqualified success. As the “patient/doctor” divides fell, all groups came together to recognize PDF’s fifty years of service and support in the Parkinson’s community. However, as Robin Elliott, PDF’s Executive Director, stated in his welcoming remarks, this time is not for celebration, but for recommitment. Now is the time for all of us, whether we work in the laboratories of science or in the halls of nursing homes, whether we have PD or not, to recommit ourselves along with PDF to finding a cure for Parkinson’s disease and to enhancing quality of life for those who live with it. I know I am not alone in my hope that fifty years from now, the Parkinson’s Disease Foundation, under a different name and with a different mission, will be well on its way to helping solve a quite different disease.
Ann Wasson is a person with Parkinson’s disease and caregiver to her husband Greg, who also has PD. She is co-chair of PDF’s People with Parkinson’s Advisory Council (PPAC) and has been active in the PD community in the state of California and on a national level with the Parkinson’s Action Network (PAN).