Held at The Chesford Grange Hotel in Kenilworth, the event brought together families from all corners of the UK. One of the most striking things this year was the number of new faces – it was incredibly special to welcome so many new families into the Lily fold.
The weekend was supported by an incredible team of Lily staff, volunteers and leading mitochondrial experts from across the country, including teams from Cambridge, London, Oxford and Newcastle. Their expertise and generosity with their time helped create a safe, uplifting weekend for all involved.
Space to learn, share and connect
While the younger generation dived into creative play and games in Kids Club, the adults spent Saturday immersed in a full programme of talks, workshops and group sessions. CEO and founder Liz opened the day by reflecting on the incredible week of media attention following the announcement of the early successes in mitochondrial donation.
The positive vibe continued as Lily’s Research Manager, Maria, and Head of Patient Programmes, Katie, offered an engaging overview into the latest advancements in Lily-funded research and highlighted the importance of the patient voice in shaping future initiatives. The thoughtful questions and lively discussion that followed underscored just how important ongoing research is for everyone affected by this devastating disease.
Specialist-led breakout sessions followed, covering areas from bereavement support and emotional wellbeing to insights into current research projects. The yoga nidra wellbeing option proved popular, while Dr Ben Marram led a particularly moving session on strategies for coping with the day-to-day challenges a mitochondrial disease diagnosis presents.
The day concluded with the chance for everyone to let their hair down and celebrate together at a gala dinner. The creativity of Kids Club was on full display around the after-dinner disco in the shape of colourful bunting some of the children had made, while others proudly showed off the dance moves they’d learned earlier in the day.
Sunday spotlight on science
Not even the rain could dampen spirits, as indoor games, a petting zoo and a range of imaginative research-themed puzzles kept both kids and adults entertained during the second day. One of the highlights came from mito sibling James, who ran a hugely popular tombola using his own toys as prizes – a thoughtful act that brought smiles to many and raised valuable funds to support our work.
Then, after lunch and one final burst of energy from the drumming parade, it was time for everyone to say their goodbyes. Even those families who’d entered their first weekend with a sense of trepidation left feeling uplifted by shared experiences and the special friendships they’d formed. Everyone headed home carrying a mix of emotions including memories that will last forever.
Mito parent Joe said afterwards: “We were a little nervous about coming, it’s all still so new to us, but from the minute we stepped through the door, we felt no regrets… This weekend has left us feeling stronger and more hopeful, thank you for everything. You are changing lives, and we feel so lucky to be part of it.”
To every volunteer who gave their time, every expert who shared their knowledge and every family who made the journey – thank you. We know how much this event means to our mito community. It’s more than a weekend away – it’s a lifeline, and that’s why we’re already looking ahead to next year, determined to make it even better.
If you’d like to find out more about this event, please visit our Family Support Weekend page.