A year of research firsts and forward momentum
It’s been an exciting year for progress in mitochondrial research. The £7.5 million LifeArc Centre for Rare Mitochondrial Diseases was officially launched, marking a major step forward for the mito community. The five-year partnership between LifeArc, ourselves and Muscular Dystrophy UK brings together the UK’s leading experts to accelerate diagnosis, identify biomarkers and develop new treatments.
The Lily Foundation are responsible for working with the centre to deliver the PPIE (Patient and Public Participation and Engagement) strategy, ensuring that patient voices and lived experience shape every aspect of the centre’s work.
Which leads me to one of our proudest achievements – the launch of our Research Zone. A one-stop destination designed to make mitochondrial science more accessible, it provides the ideal home for updates from the LifeArc Centre. From advances in genetics to news from the lab, this space brings together knowledge for families, patients and researchers alike, helping to bridge the gap between complex science and the people it stands to benefit.
We also saw our patient-voice work evolve in a huge way. After the success of our pilot EPIC programme, we launched IMPACT, our virtual committee that places people living with mito firmly at the heart of research and decision-making. Progress always begins with listening, and this initiative ensures patient experience continues to shape the future of mitochondrial medicine.
And then, two milestones that truly changed the landscape.
First, research published in July confirmed the early success of mitochondrial donation IVF – a world-leading fertility technique that offers hope to families wishing to reduce the transmission of certain types of mitochondrial disease. This is a breakthrough decades in the making, and a moment I know many of our families have been waiting for.
Then just weeks later, for the first time ever a treatment was approved for one form of mitochondrial disease for use on the NHS. Idebenone for LHON marks a historic step in care, representing not just a medical advance, but hope made real.
These moments remind us why we fight so hard for progress – because breakthroughs like these change lives.
Standing beside families every step of the way
As part of that partnership with LifeArc, we launched the first of our Zoom Rooms, a series of online webinars designed to help families navigate the day-to-day realities of living with mitochondrial disease. Three more followed, each with brilliant attendance and thoughtful discussion. These sessions are now available on our website and our YouTube channel for anyone who couldn’t join live.
We now support over 1500 patients and families, and that support remains at the heart of everything we do. This year reminded us again how powerful it is when people feel informed, connected and heard.
Community at its best
This year, our community spirit shone brighter than ever.
In April, 34 runners, including myself, my partner Dave and our daughters Katie and Rosie, took on the London Landmarks Half Marathon to mark what would have been Lily’s 18th birthday year. We were joined by wider family, our Chairman, Ben, and so many incredible parents and supporters, with our cheer squads carrying us across the line with their colour and noise.
Just a couple of weeks later, 36 extraordinary Lily runners completed the London Marathon, raising an astonishing £125,000. Their resilience in the scorching heat was nothing short of awe-inspiring.
On the musical front, we were honoured to be the chosen charity for the Battersea Jazz Festival, and once again to celebrate an evening of music and fundraising at Goldsmiths Choral Union’s beautiful Christmas Carol Concert at London’s Holy Trinity Church in Sloane Square.
This year also saw our first-ever Northern Comedy Night at Manchester’s Frog & Bucket – a huge success that raised £4,000 and brought together families, supporters and a lot of laughter up north.
And thanks to your enthusiasm and hard work, World Mitochondrial Disease Week was our most impactful yet, reaching more people, creating more conversations and helping mito gain visibility across the UK like never before.
Looking ahead to 2026
2026 is shaping up to be an exciting and ambitious year for us – one that will undoubtedly bring new challenges, fresh breakthroughs and, I hope, even more reasons for our community to find hope.
In March, our much-loved Lily Gala Ball returns, and this year’s event promises to be bigger, bolder and more sparkling than ever, complete with a glamorous burlesque theme. Early-bird tickets are already being snapped up, and we’re thrilled at the prospect of bringing everyone together once again for an unforgettable night.
We’re also delighted to be returning to Manchester with our hugely popular Northern Comedy Night, which brought so much laughter and positivity last year. Alongside this, we’re exploring opportunities to visit other new venues across the UK, helping us reach even more families and supporters nationwide.
And that’s not all. 2026 will also see the launch of some new initiatives that we’ve been busy working on. We can’t reveal anything just yet, but make sure you’re following us on social media and subscribed to our newsletters so you’ll be the first to hear about the exciting things to come!
A heartfelt thank you
This year, we passed an extraordinary milestone: over £11 million raised since The Lily Foundation began. I am deeply humbled by this, and so grateful to every single donor, volunteer, runner, researcher and family who made it possible. From the bottom of my heart, thank you.
As we approach Christmas, my thoughts are with you all, especially those of you remembering someone special. I hope the season brings peace, comfort and moments of togetherness for you and your loved ones.
With my warmest wishes,
Liz & the Lily Team x