Hi Gráinne! You've been working with neuromuscular diseases at Newcastle for over a decade and were appointed Director of WCMR last year. What drew you to the role?
The work being done by the team here is truly amazing, and I felt a sense of responsibility to continue and grow on our wide-reaching accomplishments. This is so achievable given the incredible group of people I have been lucky to work with and continue to work with – all sharing the same sense of duty towards the patients and families we all serve. With regards to the role, it wasn't something I thought I'd do, but my decision really came out of that sense of responsibility to continue the cutting-edge research towards finding a cure that's already been done. Not just the legacy of my predecessor Sir Doug Turnbull, but everyone who is involved.
It also comes down to curiosity. As a scientist, it's your curiosity that drives you on, and I'm inspired by the curiosity of the next generation of life scientists. If there's a single legacy I'd like to leave behind, it's that I helped support the next generation of scientists in this field. Because if you support curiosity, science will keep developing and the world will be in a healthier position because of it.
You took on the job in the middle of the Covid pandemic. Did that present some challenges?
The pandemic forced us all to work outside of our comfort zone. Like many people, including our nurse consultant Catherine Feeney and nurse specialist Alex Bright, I was redeployed back to the wards, where extra staff were needed. Being back on the front line was strange, as I hadn't done general medicine for a while and certainly never during a pandemic. We were provided with training and amazing colleague support, and it's surprising how quickly it all comes back to you . But then again mitochondrial medicine encompasses so much general medicine, it too prepared me. It is so complex, you're always working with different symptoms, no one person's experience of it is the same.
Recent years have seen an expansion in mitochondrial disease research. Do you think we'll find a cure?
I truly believe we'll find a cure. It won't be a simple matter, because mitochondrial disease is an umbrella term that encompasses many different conditions. So just as you wouldn't expect a single cure for all types of cancer, the same is true of mitochondrial diseases. But I believe that if we continue to chip away, we'll do it, and I believe the UK's specialist centres are at the forefront of that effort. We are respected internationally but we are only one part of a larger jigsaw that involves patients, colleagues, and other organisations, in the UK and globally. I have a mantra: if we all work together, we will get there faster. It will take a huge collective effort, but I believe we can achieve it together.
The families you help are often coping with devastating suffering and loss. How does that impact your work?
As a team we are touched every day by the lives of our patients. We are speaking with families who are going through very difficult ordeals, and that gives you an emotional drive to help. We remember every single person we've lost to mitochondrial disease, we remember their name, their situation, their story. Every one of those stories drives us on.
But there are positive stories too. That's when it really hits home; you remember why you're doing this, who you're doing it for, what all the hard work and research is about. Many of the families stay in personal contact with us, which means a lot.
We're often struck by the strength of the mito community here at Lily. Is that something you notice on the research side?
Absolutely. These families go through a lot, and they have a shared goal. What's amazing is how much people want to help others who they may never meet. You'll get a family who may have just lost a loved one to mitochondrial disease, and they want to donate tissue samples for research or provide financial support that will help others in the future. Without amazingly generous people like that, our work wouldn't be possible.
When you look at what The Lily Foundation and other mitochondrial charitable organisations have done, and the passion of all the families involved, it’s very inspiring. When people build something positive out of tragedy, it spurs you on.
How does the partnership between The Lily Foundation and WCMR help patients?
Lily has championed the patient's voice, and that's imperative to what we both do. We are learning from our patient community all the time. Sometimes we challenge each other to do better, and that's good, because it forces change.
Lily are really good at asking difficult questions, at challenging how things are done, and doing it from a patient-focused perspective. Lily, like ourselves, aren't afraid of challenging established ways of thinking and working to make change happen.
What Lily does is continually put the patient first. They see that the patients and their families are the real experts in the lived experience of their disease, and that we need to listen to them to improve care and treatments. When it comes to things like research priorities, clinical trial design and clinical outcomes, they are helping us inform the future.
What's the most important message to get out about mito at the moment?
Firstly, without research there will never be a hope for a cure. Secondly, mitochondrial disease needs to be seen as a common genetic disorder. People call it rare, but in fact what science is telling us is that it's far more common than people realise. As awareness about mitochondrial disease increases and diagnosis improves, we see a rise in cases. So it's common, and often missed.
The third thing we need to get across is that mitochondrial dysfunction is the root cause of potentially hundreds of other disorders, not only primary mitochondrial diseases. My vision is that by investing in mitochondrial research, we can also potentially help research into other conditions such as cancer, dementia, and stroke also. So, we need to combine the best mitochondrial minds and work with our international partners and governments towards more investment and better policy. The COVID-19 pandemic, and the development of vaccines, has shown that when you work together and invest properly in research, anything is possible.