Press Release

7 Aug 2014

Rallying to the Challenge meeting aims to improve Parkinson’s disease clinical trials

Meeting held in Grand Rapids, Mich., aims to increase the effectiveness and efficiency of the Parkinson’s disease clinical trial system

Grand Rapids, Mich. (August 7, 2014) –  Van Andel Research Institute (VARI) is scheduled to host Rallying to the Challenge, a one-of-a-kind patient-centered meeting, which will highlight the many ways people with Parkinson’s disease can impact the clinical trial process and accelerate access to new Parkinson’s disease treatments.

The meeting will take place during the third annual Grand Challenges in Parkinson’s Disease symposium, one of the most comprehensive Parkinson’s and neurodegenerative disease events in the United States, on September 24–25 at Van Andel Institute in Grand Rapids, Mich. The symposium, hosted by VARI’s Center for Neurodegenerative Science, brings together global leaders in Parkinson’s and neurodegenerative disease research and provides a forum for people with Parkinson’s disease to interact with medical professionals and scientists. Rallying to the Challenge is co-organized by the UK-based Parkinson’s research organization The Cure Parkinson’s Trust, along with Parkinson’s Movement, a global task force of influential patient advocates committed to demonstrating the value of proactive roles for people with Parkinson’s in the clinical trial arena.

Tom Isaacs, co-founder and president of The Cure Parkinson’s Trust, will serve as the chairman for Rallying to the Challenge. Isaacs, who was diagnosed with Parkinson’s disease at age 27, is a leading advocate for people with Parkinson’s.

“To people with Parkinson’s, clinical trials represent the only way of improving their Parkinson’s treatment and impacting the quality of their lives. This meeting is absolutely critical as a means of building a bridge of understanding and cooperation between patients and those conducting trials,” said Isaacs. “We are so close to making major progress in treating Parkinson’s, and this can be accelerated through better communication and a ‘can-do’ attitude from everyone involved. Rallying to the Challenge directly addresses these issues and will act as a springboard for more relevant, collaborative, transparent and streamlined studies on Parkinson’s disease.”

Prior to the meeting, the Grand Challenges in Parkinson’s Disease planning committee and The Cure Parkinson’s Trust distributed a survey aimed at uncovering the differences in the perspectives between people with Parkinson’s, clinical trial participants and those conducting the trials. The survey’s more than 200 responses will be discussed during Rallying to the Challenge and will aid in the design of better, more patient-centric trials.

“We have a commitment to people with Parkinson’s to find ways around the obstacles that stand in our path to successful clinical trials,” said Dr. Patrik Brundin, director of VARI’s Center for Neurodegenerative Science. “By working together and by involving people with Parkinson’s from the start, we have a great opportunity to truly impact peoples’ lives.”

Large-scale Parkinson’s disease clinical trials have become increasingly rare because of the high costs, and lack of reliable biomarkers and models for the disease. The dearth of clinical trials prevents innovative discoveries from moving forward and slows the development of therapies that could positively affect patient health. Establishing Parkinson’s disease clinical trials in Grand Rapids is a crucial element of VARI’s Center for Neurodegenerative Science’s growth plan.

Involving people with Parkinson’s in clinical trial development will foster a collaborative spirit and help develop better, more inclusive trials, said West Michigan resident Ron Rutkowski, who was diagnosed with Parkinson’s a decade ago. Rutkowski raised $15,000 in three days to help support Rallying to the Challenge.

“I think it’s important to get patients involved with the scientists so everyone can understand what the other group is doing, instead of patients having to speculate about what’s happening on the scientific side and not knowing what scientists have to go through to get things approved,” said Rutkowski. “We’re all on the same team with the same goal—to beat Parkinson’s.”

Registration for Rallying to the Challenge is part of registration for Grand Challenges in Parkinson’s Disease, which can be completed at www.grandchallengesinpd.org. Information on Grand Challenges in Parkinson’s Disease and Rallying to the Challenge also can be found at www.facebook.com/GrandChallengesinPD.

About Van Andel Research Institute

Established by Jay and Betty Van Andel in 1996, Van Andel Institute (VAI) is an independent research and educational organization based in Grand Rapids, Mich. Van Andel Research Institute (VARI), VAI’s research arm, is dedicated to studying the genetic, cellular and molecular origins of cancer, Parkinson’s and other diseases and working to translate those findings into effective therapies. Find out more about Van Andel Institute or donate by visiting www.vai.org. 100% To Research, Discovery & Hope®.

About The Cure Parkinson’s Trust

Founded by people with Parkinson’s, the UK-based The Cure Parkinson’s Trust has one aim – to find a cure. It funds innovative scientists with a particular interest in projects and trials that slow, halt or reverse Parkinson’s. Led by people with Parkinson’s, the charity involves people living with the condition in shaping its research policy, approaches and priorities through Parkinson’s Movement. www.cureparkinsons.org.uk