Increasing awareness – and increasing our team! - The Lily Foundation
The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Increasing awareness – and increasing our team!

Research Awareness

25 January 2024

There’s a lot going on in the world of mitochondrial disease research right now, making it an exciting time in the quest for treatments. And as the amount of ongoing research has grown, so has our team – meet our new Research Manager, Maria

Three members of Lily staff sit at an awareness table covered in Lily Foundation leaflets

Maria O’Hanlon joined us at the start of the year to support our expanding research portfolio. Having gained a degree in Biomedical Sciences at Nottingham Trent University, Maria went on to study her Masters at Newcastle, where she spent time in the Newcastle Fertility Centre and crossed paths with the team working in the field of IVF and, in particular, mitochondrial donation.

At the same time, through her mum who works at an occupational therapy clinic, she met a young boy who suffered from mitochondrial disease. Maria kept in touch with his family, and this gave her a personal as well as a professional connection to the disease. So when it came to doing her PhD, she chose a subject close to her heart – mitochondrial research, but in this case looking at it in connection with Parkinson’s.

After completing her studies, Maria worked for a time at a life sciences marketing agency. But already familiar with The Lily Foundation through her work at Newcastle, she leapt at the chance to become involved with the charity and work in the field of mitochondrial disease research once again.

“Joining the Lily team has been the best start to my year,” she said. “I’m really looking forward to getting involved in the research projects The Lily Foundation are funding, meeting patients affected by mitochondrial disease, and collaborating with clinicians and researchers dedicated to enhancing treatments and deepening our understanding of the disease.”

The research team hit the road

And Maria had barely got her feet under the table before she was out on the road with colleagues Alison (Head of Research & Innovation) and Katie (Patient Engagement & Advocacy Manager), heading to Bristol for this week’s 50th annual conference of the British Paediatric Neurology Association (BPNA).

The BPNA is the professional organisation for doctors who specialise in the care of children with neurological disorders. Attended by paediatric neurologists and trainees from all over the world, this conference has always been a great opportunity for us to spread the word about our work, and this year’s event is no different.

As well as meeting with medical professionals, the conference also gives us the chance to catch up with other charities and patient organisations. We know collaboration makes us stronger, so sharing progress and strengthening our connections leaves us all in a better position to support the patients and families who are living with neurological conditions all over the UK.

The growth of our team comes at an exciting time and cements the importance of not just research but the patient perspective in research. Patients are the ones who understand what it's like to live with mitochondrial disease every day, and we believe that giving them a voice, and ensuring they’re involved and informed, holds the key to discovering effective treatments. So it makes sense that we’re expanding our resources accordingly.

And we look forward to Maria and our growing team continuing to drive that all-important research and raise awareness of mitochondrial disorders by developing ever-stronger connections with our partner organisations in the global mito community. Starting today!

Donate today

Donate through JustGiving to help us continue funding life-changing research – it’s our best hope of finding effective treatments to improve the lives of mitochondrial disease patients.