Everyone here at The Lily Foundation is filled with pride at the incredible progress we’ve made together over the last 12 months. Our community’s dedication and strength have helped to drive meaningful change in our mission to support those affected by mitochondrial disease. There’s a lot to celebrate from this year and so much to look forward to in 2025.
Advancing mitochondrial disease research
Lily-funded research continues to deliver promising advances in treatments and improvements to the quality of life of patients today. Prof Antonella Spinazzola’s study on 2-Deoxyglucose (2-DG) has highlighted the potential of small molecule drugs in treating mitochondrial dysfunction, while UCL’s completed study on vestibular dysfunction offers hope for improved access to appropriate treatments for mito patients affected by balance issues.
We recruited Jamie, a PhD student based in Newcastle, to our pioneering diagnostics project, which is now gaining momentum. Recruitment sites have opened in London and Cambridge, with more to follow next year. The project aims to improve diagnostic rates for complex cases of mitochondrial disease, offering clarity to patients today whilst advancing our wider understanding of the disease and paving the way for future treatments.
This year we’ve invested around £250,000 in three major new studies, and we welcomed Maria to the charity as Research Manager in January. Maria is dedicated to keeping our community informed about progress in mitochondrial disease research, and she’s spearheading the launch of a new area on our website that will be the hub for such information – look out for this early next year.
We remain deeply committed to amplifying the patient voice. Katie, our Patient Engagement & Advocacy Manager, will continue to work closely with patients through our PPIE committee, which will be having a makeover in the new year. A key focus for the group will be the LifeArc project – a ground-breaking, multi-site centre for mitochondrial disease research dedicated to advancing new treatments.
Spreading the word far and wide
Our awareness campaigns achieved new milestones this year. Once again, we joined forces with our global partners during World Mitochondrial Disease Week. We planned a range of activities aimed at educating the public about mito, its impact and the urgent need for investment in research and support. Thank you to everyone who helped to put mito on the map via social media, public events and partnerships. A special mention to long-term Lily supporter, Kevin Day, who bravely walked 63 miles across London via 13 football stadiums to raise money and awareness.
Back in March, after a lot of hard work we launched our brand new website, and the response has been really positive. Whilst a dedicated section has made it easier for patients and families to access support and information, the site as a whole has become a valuable tool for sharing our mission, telling inspiring stories and engaging with our wider community, no matter where they are.
Expanding support services
Supporting patients and families affected by mitochondrial disease is, of course, at the heart of our mission. In January we launched a new, free online counselling service in partnership with RareMinds. The response was overwhelming, and the team have been working at capacity throughout the year. With four out of five participants feeling more resilient and three out of five less isolated after sessions, the impact is clear. However, we urgently need additional funding to expand the service and meet the demand.
As well as our biggest – and best yet – Family Weekend, we held our first Support Weekend specifically for adult mito patients. With a strong focus on wellbeing, and activities from pottery and clay shooting to wine tasting and head massage, the event was a resounding success, with one patient sharing that it “meant the world to her” and had “completely changed her life”. Feedback like this highlights the invaluable impact of the work we do, and we’re delighted to confirm the weekend will be back next year.
A year of ambition and action to come
Thanks to the generosity of our donors and the dedication of our staff and volunteers, we’ve now raised the incredible figure of over £10.5 million. These funds are essential for continuing our work in research, support and awareness, and as we look forward to 2025, we’re more determined than ever to continue making a difference in the lives of those affected by mitochondrial disease.
We have an exciting calendar of fundraisers lined up to help us continue our vital work. Whilst we’re sad to announce that there won’t be a ball next year, it will return in 2026, bigger and better than ever. In the meantime, we have plenty to look forward to, from firm favourites like our Comedy Night and Fight Night to new fundraisers (stay tuned for more details in the new year). After this year’s success, our South West Golf Day will be returning, and we’re expanding our reach with plans to head further north too. We can’t wait to see you all!
In April, myself, Dave and our daughters, Katie and Rosie, will be running together in the London Landmarks Half Marathon. What started out as a small but meaningful challenge – to commemorate what would have been Lily’s 18th birthday – has grown into something truly special, with many other families signing up to run with us and others promising to cheer us on from the sidelines. What a wonderful way to honour Lily’s memory and bring our community together.
A heartfelt thank you
I’d like to extend my deepest thanks to everyone who has supported The Lily Foundation this year. It’s your generosity, dedication and belief in our mission that have made all the difference. As 2025 draws near, I’m inspired by your commitment to join us in fighting mitochondrial disease and finding hope for all those affected.
Finally, I’d like to wish everyone a peaceful Christmas and send my heartfelt thoughts to those who are remembering someone special at this time of year.
Liz and the Lily team x