The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

"The one place we can be ourselves"


3 February 2023

At the recent 49th British Paediatric Neurology Association conference in Edinburgh, we found ourselves one of just eight exhibitors invited to host a stand and display our work. What’s more, it was with great excitement that we discovered The Lily Foundation were the only charity selected to deliver an oral presentation at the event.

A woman stands in front of a large poster which has the title The One Place We Can Be Ourselves

Assessing the impact of the Lily Family Support Weekend on families affected by mitochondrial disease

We decided to seize the opportunity to showcase the impact of our Lily Family Weekend, and we pulled our findings together into a poster presentation, supported by a speech given on the final day of the conference by our Science and Patient Engagement Officer, Katie Waller. Katie and her colleague Alison Maguire, Head of Research and Finance, worked hard to pull together the poster's content in an engaging and easy-to-digest format.

A poster contain graphs, Pictures and information about the benefits of Lily Foundation Support Weekends

Our Family Weekend is one of the most popular, and most anticipated, dates in the annual Lily calendar. A unique opportunity for families affected by mito to get together and relax in a safe and caring environment, it’s a 2-day residential experience full of informative talks, workshops and support for adults, with plenty of fun activities to keep children of all ages entertained too. But how successful is it really? And how can we measure that success?

A little boy in a Lily Foundation Tshirt holds a pen. He is smiling and having fun

Every family who attends is emailed a link to a free online survey to complete after the weekend. Participants are asked to rate the various elements of the weekend, and invited to pass on any further comments they might have. As you can see from the table, the results were pretty conclusive!

A graph showing the benefits of support weekends to Lily Foundation Families

An incredible 100% of those surveyed strongly agreed that they would recommend the weekend to other families, with a massive 96% planning to attend again the following year. Here’s just some of the amazing feedback we’ve received:

We adore our Lily family, the one place where we can just be us! We are understood and listened to here”

We know that having a child with mito can be an incredibly isolating experience, so it’s clear our annual family weekend is offering a safe and supportive environment for families to come together, meet others living with the condition and foster long-lasting friendships. It’s also giving the little ones a chance to have fun and get involved in a range of inclusive activities including creating flowers, building forts, t-shirt decoration and slime making! Meanwhile the grown-ups are given access to a tailored programme of informative sessions delivered by some of the UK’s leading experts in mito. All capped off by the gala dinner which is a real treat for everyone.

The Lily Weekend is a lifeline to us, a chance to feel normal amongst friends. Not just friends, these people have become family”

72% of those at the weekend attended at least one medical lecture. Of those, 94% found them enjoyable, and liked their informal nature which helped put attendees at ease. 88% said the information they got from professionals addressed their needs, and 94% said they felt comfortable enough to ask questions and share their own experiences.

A group of adults sit on chairs in a circle They are looking towards one man and listening to what he is saying

When it came to the hot topics covered by the medical panel, 91% of those surveyed said the information given addressed their needs, whilst a resounding 92% said they felt comfortable to ask questions themselves. 75% felt they had learned new information of value to themselves and their family, and 91% took something from hearing the experiences of other families. And overall, 100% of attendees found the medical information sessions beneficial.

To be able to meet families in the same situation who are now supportive friends"

To conclude, qualitative and quantitative feedback from the most recent event demonstrates that the Lily Family Weekend successfully meets its objectives and is highly valued amongst families. The success of the event has led the team to organise a similar event for young adults, and we will continue to collect feedback to help ensure that the weekend remains of value to our families. To find out more about the Lily weekend, please email [email protected].

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