Many of the researchers and PI’s within the Wellcome Trust Centre for Mitochondrial research participate in a variety of engagement activities, below are a small number of examples of these activities. If you would like to learn more about how you can participate or get involved please contact us.
Dr Lyndsey Craven-Butterworth, Research Associate
My research involves assessing the safety and efficacy of mitochondrial donation, a novel IVF technique that has been developed in collaboration with the Newcastle Fertility Centre to prevent mitochondrial DNA disease being passed from mother to child. When I began working on this project in 2005, the law in the UK prohibited the use of mitochondrial donation as a clinical treatment and required a change in policy. After an extensive review that took place over several years, crucial votes were held in the Houses of Parliament in February 2015 which led to the legislation being passed to make mitochondrial donation legal in the UK. I was very fortunate to be involved with some of the policy engagement surrounding this process, which included attending a number of briefing sessions in the Palace of Westminster to engage politicians and discuss the science behind mitochondrial donation. This was a remarkable experience and highlighted to me the important role of engagement in ensuring that policy decisions are based on accurate scientific advice.
Dr Laura Greaves, Research Fellow
Involving the public in my NUAGE teaching module has not only helped to improve the module and teaching methodologies but has also stimulated inter-generational communication and knowledge transfer.
Alexandra Bright, Research Nurse
On 16th March we hosted a’ Mitochondrial Research Matters’ dissemination event where mitochondrial patients and their relatives/carers from the North East region were invited to celebrate their involvement in research.
Thanks to their ongoing involvement, we have been able to engage in ground breaking research, have a better understanding of mitochondrial disease and how it affects the lives of people living with a mitochondrial diagnosis.
The event afforded us the opportunity to showcase some of the most recent clinical research that had been conducted by the team in Newcastle and how taking part in the mitochondrial cohort (database) helps with laboratory research, identifying clinical trends and what our plans are to continue with this work in the future.
The event proved popular with patients and their families/carers as it enabled meeting and networking with other mitochondrial patients and the opportunity to liaise with the wider research team. The event also raised awareness of all aspects of our research, and afterwards patients and their families said that they felt better informed and that their contributions to research had been useful and valued.
Hannah Rosa, PhD student
Taking part in public engagement events has greatly benefited my research by enriching my career and personal development. I have really enjoyed the challenge of presenting our current research at events such as Science Uncovered at the Natural History Museum to really keen and enthusiastic members of the public, and in doing so have gained a much better understanding of my own work and it’s wider scientific context.
Christie Waddington, PhD student
I have been fortunate enough to collaborate with local artists and mitochondrial disease patients to produce exciting bodies of work using different mediums that represent mitochondrial disease and our mitochondrial research. As a researcher, I look at my data with one aim or looking for that one result. This collaboration has broadened my appreciation of these images and the results that we acquire.
Our aims are to use these bodies of work to take into local schools and public engagement events to initiate conversations and discussions about Mitochondrial Disease and hopefully inspire young people to take up a career in science.
Julia Maddison, Clinical Trials Manager
As our Clinical Research Manager I apply for all of the ethical and regulatory permissions to conduct research with human participants and the collection and storage of human material within our group. During this process I assist with designing research protocols that are both practical and aim to answer the specific research question. Over the years we have engaged with our patients in a number of ways in order to help us successfully recruit to these studies that then allows us to answer these vital questions. This has involved holding focus groups with patients about what is important to them and how we could improve their daily living, asking for feedback on patient information sheets given to participants of research studies and holding events where researchers can present their findings to those who took part. Designing and conducting research with patients and their family members at the centre of our thoughts is essential if we are to improve our understanding of mitochondrial disease and provide the best healthcare available.