How did it all start? Here’s the history of P.R.A.G.
The start of the Parkinson’s Research Interest Group on FB
The Parkinson’s Research Interest Group (PRIG) on Facebook was started by Martin Taylor in February 2017. There was a variety of motivations for Martin to do this, firstly it was done as a proof of concept to demonstrate how social media could be used to provide a platform to disseminate and discuss the latest news on Parkinson’s research. There was also a recognition that no existing group on Facebook had successfully maintained a specific focus on research and furthermore that there was a need to address a lot of the misinformation and speculation that existed on other Parkinson’s discussion groups about what was happening in the field. Lastly it was felt that there was potential to create a platform on which both researchers and patients could interact to the mutual benefit of each others understanding.
Parkinson’s Research Interest Group grows
It was recognised from the beginning of the group that clearly defined posting rules and strong moderation would be required in order to keep the content of the group focussed and to achieve some of the aims that motivated it’s creation. To that end the people appointed as administrators and moderators were carefully chosen for both the knowledge, experience and personality they had to help the group achieve its objectives. It is the strength and depth of the administration team that have contributed hugely to the group’s success. As of the end of January 2018, the group was fast approaching 1500 members from all over the world and also includes amongst it’s membership, some of the most prominent and illustrious research scientists in the field of Parkinson’s.
The start of P.R.A.G.
It was from the discussions amongst the PRIG admin team, and the consequent realisation that we as a group of people had strong connections and profile in the world of Parkinson’s, that there was a recognition that there was an opportunity to leverage the skills, experience and knowledge of the group to create P.R.A.G., the Parkinson’s Research Advocacy Group, which ultimately aims to use its influence to make PD research more relevant to people with the condition.