We’ve been privileged to have two people with Parkinson’s join the consortium. At our final project meeting in Copenhagen, Richard and Paula gave an inspirational farewell message, highlighting why continuing Parkinson’s research is so important. You can see their final presentation here.

Richard Campbell

I was very impressed by the co-operation of the different research laboratories, academic institutions, pharmaceutical companies and charities in the PD-MitoQUANT consortium. The leadership and management of the project was of a very high level. Such a wide ranging and substantial effort is needed if we are to find a cure for Parkinson’s or at least have a chance of slowing the progress of the disease or improving treatments in future. This philosophy of the consortium must continue even if the present grant ends in July 2022.

Such research into the basic causes of Parkinson’s is needed to support future clinical advances. The science is spectacular, but it is important to keep such projects firmly fixed in reality: the aim is ultimately to benefit people with Parkinson’s. I hope that Paula Scurfield and I, as Patient and Public Involvement (PPI) volunteers, were able to supply this reality check by our presence and our presentations at the annual meetings. There were many smaller opportunities to assist during the three and a half years of being part of the project: a good example of PPI volunteers in research, hopefully to the benefit of the research and to people with Parkinson’s.

Minor travel difficulties were more than compensated for by the pleasure of meeting the scientists face-to-face and feeling their enthusiasm for the project as a whole and their own part in particular. I have updated my limited knowledge of biochemistry, genetics and cell biology along the way and this will help me to explain Parkinson’s to people affected and to the general public. I will continue to be involved with PD-MitoQUANT for a while with publications and their plain English summaries, and I have already become part of other research projects. 

Paula Scurfield

I guess the worst part of a Parkinson’s disease diagnosis is how easy it can be to feel hopeless and that, however bad one’s symptoms are now, knowing they can only get worse. There is no cure, no non-invasive disease-modifying therapies available, and any drugs we take merely ameliorate our symptoms.  However many pills we swallow today, that number will likely increase tomorrow. It’s a bit like putting a small sticking plaster on a large gaping wound. The one bright light at the end of a seemingly interminable dark tunnel is the hope we get from being involved in research studies. Listening to the researchers’ passionate discussions is both intellectually inspiring and emotionally comforting. The past three years as a PPI volunteer for the PD-MitoQUANT study have been extremely enjoyable. We were quickly welcomed as an integral part of the team. I shall greatly miss the support and friendship of these wonderful people and wish to thank Parkinson’s UK for entrusting Richard Campbell and myself with such a rewarding role.

It can provide so much hope and the knowledge we gain is empowering!