Around 50 families affected by mitochondrial disease came together from across the UK for The Lily Foundation’s flagship Family Support Weekend, held once again at the Chesford Grange Hotel in Warwickshire.
The event brought together a mix of new faces and familiar friends, creating a welcoming and supportive environment for families to connect, share experiences and learn from one another. With plenty of sunshine, the setting was perfect for a weekend focused on community, support and discovery.
Throughout the weekend, parents and carers had access to a wide range of informative and supportive sessions. These included talks led by leading clinicians, a popular ‘Meet the Mito Experts’ drop-in session, bereavement support and dedicated wellbeing time. For those looking for something a little more active and alfresco, there was even archery on offer.
Families also had the chance to hear directly from researchers working across the UK on mitochondrial disease. In a series of short, engaging presentations, science experts shared insights into their current work. Attendees were invited to vote for the most accessible and engaging presentation, resulting in the first-ever Lily PPIE Award being presented to Jenny Yang from Cambridge for her outstanding contribution.
The weekend highlighted the strong commitment from the medical and research community, with experts from London, Newcastle, Cambridge, Oxford and Manchester giving up their time to support families and share their knowledge.
While the adults took part in sessions and discussions, the youngsters were kept busy with a packed programme of fun activities led by The Lily Foundation’s incredible volunteers. Their energy and dedication ensured that younger attendees were kept busy and creative.
Sunday brought even more to look forward to with the introduction of a brand new Science Festival. Designed to bring science out of the lab and into the hands of families, children became ‘mito explorers’ as they took part in a variety of simple, interactive experiments. As they worked through activities, they collected stamps and earned the title of Mito Science Explorer, sparking curiosity and excitement about the science behind mitochondrial disease.
Mito parent and weekend first-timer Joanna emailed her thanks afterwards. “It was so nice to meet Liz and everyone from the charity,” she wrote. “We also found it so helpful after a year of uncertainty and lots of hospital appointments to have the chance to feel we are not alone in this and to speak to other families, parents and specialists… how nice is it to not feel so isolated now.”
And that’ s exactly why this weekend is so important to affected families – combining learning, support and fun in equal measure so that no one has to face mito alone.
A huge thank you goes to the entire Lily team, our dedicated volunteers, Artpods and the clinicians and researchers present, all of whom worked tirelessly to make this year’s event even better than the last. A challenging task, but one they achieved with great success. This special weekend simply wouldn’t be possible without the passion and commitment of every one of you.
