“This meeting is absolutely critical as a means of building a bridge of understanding and cooperation between patients and those conducting trials,” Tom Isaacs said, in a statement released by Van Andel Institute. “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.
I’ve written about the need for engagement of the patient/advocate in influencing research and the call is being sent out for any and all whom are interested in helping us to get to the next level of research that will get us disease-modifying treatments, while the work of finding a cure continues.
The Van Andel Institute in Grand Rapids, Michigan, along with one of the world’s premiere researchers in Parkinson’s Disease, Dr. Patrik Brundin, are showing what it means to have the patient voice listened to in the research process. Some may say that this has been happening already and I must say that there is a shift in some corners of the research community to allow advocates to help with many aspects of the research process. True dialogue, frank discussions, purposeful deliberations, all with the person living with Parkinson’s Disease at the heart of the conversation have been ongoing for several months between the Cure Parkinson’s Trust, Parkinson’s Movement, and the Van Andel Institute. As a result of this, those attending the meeting in September will experience “the likes of which we haven’t seen before”.
Grand Challenges in Parkinson’s Disease, as well as the patient-driven Rallying to the Challenge portion of the meeting, is different in several ways. First, we are seeking to improve clinical trials that are of importance to the patient community. Second, opening up the lines of communication with the research community and among the patient community, getting a sense of why patient involvement in trials is woefully low, we can develop an action plan to get trials completed on time, with results out to the patient community sooner. Third, our efforts are on an international basis in order to find best practices from around the world and help make them more effective. Bottom line for those of us living with Parkinson’s Disease is that we feel that the process can be improved, more patients/advocates made to feel welcome in the process, knowing that what they have to offer has worth, and being the catalyst that will yield results.
If you have been involved as an advocate for awareness and education, we welcome you to join us as we “rally to the challenge”.
If you have no experience as an advocate, we welcome you to join us as well, because “rallying to the challenge” includes all of us doing our part.
The action plan that will be developed during the Rallying to the Challenge meeting will be shared as soon as possible after the Grand Challenges meeting. We will be reaching out to many of our fellow advocates across the country and around the world to help us implement the plan, gather some hard data on the initiative, and get us closer to living in a world that is Parkinson’s-free.
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