Throughout the summer, the Newcastle iGEM team has been working alongside Parkinson’s UK, a research and support charity which aims to improve the quality of life for people affected by Parkinson’s Disease (PD) and find a cure.
To assist in the development of our indicative diagnostic tools, we have designed three biosensors to detect factors associated with early PD. By attending various Parkinson’s UK events we initially aimed to develop a greater understanding of how PD impacts people living with the disease and their carers. This includes the current diagnostic resources and support available within the local community. From this, we wished to evaluate the implications of an indicative diagnostic tool and if ‘muninn’ would be accepted by the wider public. Our final goal was to also increase the outreach of both iGEM and synthetic biology.
After engaging with attendees from across various Parkinson’s UK events. It is clear that there are already varying levels of local support within the Tyne and Wear region, these vary from a casual café meet-up to a more informative meet-up with the possibility for physical therapy-based activities. However, becoming diagnosed as well as transitioning from medical care to local support is frequently problematic.
The opportunity to attend several charity events enabled us to review the current method of diagnostics and subsequent care from the perspective of individuals affected by PD and develop an improved diagnostics method by integrating information about early non-motor symptoms. Whilst Connor’s educational outreach in a Northumberland academy, in combination with Alice and Emily’s participation in the Parkinson’s UK Geoff Cobbing Memorial Cycle has increased the understanding of synthetic biology beyond our current generation.
Why we chose Parkinson's UK?
After the formation of ‘muninn’, the team agreed it would be beneficial to speak directly to people affected by PD to understand the current limitations within our healthcare system and to gage whether ‘muninn’ would provide an appropriate solution. We chose to not pursue PD contacts via the National Health Service (NHS) as the necessary formalities of ethical approval may lead to unrealistic medical expectations. However, charity organisations such as Parkinson’s UK acted as a suitable intermediate providing that team members were only there for observation and general discussion.
John Lewis Café – Eldon Square, Newcastle City Centre
From navigating the Parkinson’s UK website, we discovered Ms Vivienne Rogerson, area development manager for Parkinson’s UK Gateshead, North Tyneside, Newcastle and Northumberland, who informed us about several local support meetings with varying levels of support and structure. The John Lewis café at Eldon Square meet-up was a very informal social activity that gave individuals the opportunity to meet people familiar with the condition, a place of mutual support.
From two bake-sales, the Go Fund Me page, and any additional donations for the memorial cycle the team raised a collective total of £387 for Parkinson's UK!!
The Fellsider Bar and Kitchen – Whickham, Gateshead
The second Parkinson's UK meet-up was at The Fellsider, a local pub in the Whickham area, a casual event for social interaction and mutual support. Unfortunately, there were no people affected by PD or carers in attendance. his was likely due to the date falling in the middle of the school summer holidays rather than a lack of awareness. However, speaking to the volunteers at The Fellsider it brought to our attention the potential difference in healthcare divisions between various constituencies in the North-East region, particularly the time taken to be referred to a neurologist as well as then being provided information for support groups after a diagnosis.
Our experience at the Fellsider highlighted that there is no lack of support for people with Parkinson's Disease, but there is a huge disconnect between national medical services and support in the local community. To evaluate this further the team decided to reach out to both general practitioners and neurologists with a PD specialism. More information about discussions with medical practitioners can be found on our Human Integrated Practices page.
The Marriott Hotel – Gateshead
As one of the larger local PD gatherings, it is common for the volunteer organisers to arrange activities that help ease motor symptoms, in past meetups there has been the addition of yoga and even gardening. However, in the session we attended, Rosie Anderson was leading a local community sing-along. All 22 attendees were enthusiastic and contributed to the best of the ability, many carers and regular attendees pointed out that it was the liveliest and most vocal some people had sounded in months.
More information about Rosie Anderson and her involvement in Community Speaking Therapy can be found on our Human Integrated Practices page.
After speaking to members in attendance it was interesting and sad to learn that the NHS does not offer such activities for people living with Parkinson's, only medical treatments to manage motor symptoms. We also became aware of other pre-motor PD symptoms such as losing the sense of smell and a lack of facial expressions. Both symptoms can be linked to general age-related cognitive decline, however, the rapid deterioration is more specifically linked to PD. The team also heard a range of different people’s experiences with PD, some had a sense of relief from a confirmed medical diagnosis, whilst others had never heard of PD before. It seemed that many people knew, or at least suspected for years before their diagnosis that they had PD. People living with Parkinson's and carers discussed the pros and cons of early diagnostics. This highlighted the fact that a medical diagnosis mainly relies on the presentation of late-stage motor symptoms, and a need for both earlier diagnostic procedures and alternative medical treatments.
Educational outreach in schools
In early September, Connor was invited to give a seminar to groups of 14-15 and 16-18 year olds. This seminar included Connor's past and current iGEM projects and discussions about how synthetic biology has developed since the participants were born. This was done to introduce concepts of Synthetic Biology early so that they have the opportunity to learn more about the field and potentially decide to continue into biology at university.
The Geoff Cobbing Memorial Cycle with Parkinson's UK
Throughout August, the team were able to attend three local Parkinson’s UK meet-ups. Being able to witness how these sessions benefitted people affected by PD was touching and members of the team wanted not only increase awareness of the importance of physical activity, but also contribute to the charity through fund-raising. On both August 21st and September 2nd, the team held a bake sale in the Devonshire building at Newcastle University.
All the money raised through the bake-sales’ open donations and the team’s Parkinson’s UK Go Fund Me page was donated to the Geoff Cobbing Memorial Cycle on September 15th. Both Alice and Emily cycled alongside other Parkinson UK riders with full support from the Newcastle iGEM team.