Hundreds to attend Parkinson’s disease research symposium, patient meeting
September 24, 2015
GRAND RAPIDS, Mich. (September 24, 2015)—Almost 300 scientists, people with Parkinson’s, advocates and industry representatives will converge at Van Andel Research Institute (VARI) at the end of September with a common goal—fighting back against Parkinson’s disease.
Several events will be held under the umbrella of Grand Challenges in Parkinson’s Disease, a world-class scientific symposium that draws scientists from around the globe to discuss their latest research and clinical efforts. Now in its fourth year, Grand Challenges continues to expand by including a parallel conference called Rallying to the Challenge, which is organized and run by Parkinson’s advocacy groups. This year, the Institute is pleased to also host the American debut of the photo exhibit This is Parkinson’s as well as a book signing by award-winning science journalist Dr. Jon Palfreman.
Grand Challenges in Parkinson’s Disease
Since its inception in 2012, Grand Challenges in Parkinson’s Disease has provided a forum for scientists and the Parkinson’s community to collaborate. This year’s theme is The Role of Alpha-Synuclein, which will explore the role of an abnormal form of a protein important in the disease mechanisms that underlie Parkinson’s. Clumps of alpha-synuclein are found in the brains of people with Parkinson’s and research published in the past 18 years has shown a strong link between misfolding of this protein and the disease.
“Having representatives from all the key groups in the Parkinson’s research community—scientists, clinicians, industry, advocates and people with Parkinson’s—under one roof is extraordinarily valuable,” said Patrik Brundin, M.D., Ph.D., director of VARI’s Center for Neurodegenerative Science. “New insights and opportunities for creative collaborations can emerge from the scientific presentations or a simple conversation during a coffee break.”
VARI also will present the Jay Van Andel Award for Outstanding Achievement in Parkinson’s Disease Research to Robert Nussbaum, M.D., and Maria Grazia Spillantini, Ph.D., FMedSci, FRS, for their groundbreaking discoveries regarding alpha-synuclein and its role in Parkinson’s.
Rallying to the Challenge
Rallying to the Challenge, hosted by U.K. research charity The Cure Parkinson’s Trust and its patient-led engagement arm Parkinson’s Movement, brings together people with Parkinson’s and advocates from around the world to devise ways to positively impact clinical trials. Now in its second year, Rallying to the Challenge will build on the success of the inaugural meeting by exploring the best ways to measure clinical trial outcomes, self-monitor symptoms, and improve the trial process.
All new therapies for Parkinson’s must go through clinical trials, which ensure the safety and efficacy of the treatment. Historically, participation rates for Parkinson’s trials have been low, which places roadblocks in the development and clinical testing of new treatments. Last year’s meeting focused on issues that contribute to this low turnout and sought to find solutions to these issues. The meeting resulted in a Parkinson’s Clinical Trials Charter that the Trust hopes will improve participation in trials and enhance the relationship between participants and those running the trial.
This year’s meeting will focus on deciding which symptoms can be used to benchmark Parkinson’s, and will include talks, panel discussions and presentations from people with Parkinson’s, advocates, and representatives from organizations such as Google, ParkinsonNet, National Parkinson Foundation, Parkinson’s Movement, The Cure Parkinson’s Trust, The Michael J. Fox Foundation for Parkinson’s Research, and World Parkinson Coalition, among others.
This is Parkinson’s
A unique photography exhibit aimed at redefining how the world views Parkinson’s disease will make its international debut during Grand Challenges and Rallying to the Challenge.
This is Parkinson’s features photos of people younger than 50 who have young onset Parkinson’s disease. The exhibit is the work of Norwegian photographer Anders M. Leines, who set out to showcase a more accurate portrayal of people with the disease following his Parkinson’s diagnosis six years ago.
The most common perception of people with Parkinson’s is that of an older person with tremors and a stooped posture, a stereotype reinforced by a commonly used medical illustration from the late 1800s. However, the image does not reflect reality, Leines said.
“I hope to empower the Parkinson’s community and move the field higher up on political and public agendas; this way, patients can hold their heads up, advocates can become inspired and collectively we can re-envision negative depictions of Parkinson’s while giving the dull image of Parkinson’s a serious overhaul,” Leines said.
Brain Storms book signing
When Dr. Jon Palfreman was diagnosed with Parkinson’s in 2011, he undertook a new focus—understanding every facet of the disease and the efforts to cure it. But his history investigating the disease began much earlier. His 1985 documentary, The Case of the Frozen Addicts, told the story of six people who acquired severe parkinsonian symptoms after taking a bad batch of drugs. Their plight provided new insight into the disease and revolutionized the way Parkinson’s disease research is conducted.
Now, in his latest book Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease, Palfreman explores the history of the disease, from obscure mentions in historical texts to James Parkinson’s first description of “shaking palsy” to the cutting edge research now being conducted in laboratories around the world. Part history, part scientific detective story and part self reflection, Brain Storms takes the reader into the lives of advocates, scientists, doctors and, most importantly, people with Parkinson’s who are all fighting for a cure.
Along with participating in Rallying to the Challenge, Palfreman also will participate in two book signings at 2:30 p.m. and 6:00 p.m. on September 30 at VARI.
Grand Challenges in Parkinson’s Disease and Rallying to the Challenge will be held Sept. 30–Oct. 1 at Van Andel Research Institute, 333 Bostwick Ave. NE, Grand Rapids, Michigan. There also will be a reception welcoming attendees and honoring Leines and Palfreman beginning at 5:30 p.m. Sept. 30. This is Parkinson’s and the Brain Storms book signing are open to registered attendees of Grand Challenges and Rallying to the Challenge. Members of the media who would like to set up interviews or cover the events and/or the exhibition should contact David Jackiewicz at 616.234.5792 or David.Jackiewicz@vai.org.