Family Support Weekend - The Lily Foundation
The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Young boy with mito, doing a wheelie in his wheelchair past a slime making station at family weekend. Young boy with mito, doing a wheelie in his wheelchair past a slime making station at family weekend.

Family Support Weekend

A wonderful chance for families affected by mitochondrial disease to come together and find support

Lily volunteer assisting a young girl with mito to make a wicker basket craft activity

Living with a diagnosis of mitochondrial disease can leave families feeling isolated and alone. The Lily Family Support Weekend is a unique opportunity for our families to get together and relax in a safe, caring environment where people just ‘get it’.

It’s been described as ‘special’, ‘wonderful’, ‘brilliant’, even ‘life changing’. One thing’s for sure, this residential weekend is one of the most popular events in our Lily calendar.

It’s an opportunity for families to get together and relax in a safe, caring environment, and includes social activities, informative talks and workshops from the UK’s top mitochondrial doctors for the adults plus plenty of fun activities to keep little ones of all ages entertained.

With meals and childcare all taken care of, and plenty of Lily helpers on hand, adults are free to attend seminars, socialise or just enjoy some much-needed time off.

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It was an amazing weekend to meet families who understand what we are going through. We learnt so much and also had some much-needed family time.”

— Rachel, mitochondrial disease parent

Reflections on the Lily Family Support Weekend

We hear from mito parents Kerry and Sid about their experiences of attending The Lily Foundation Family Support Weekend in 2022.

This event is designed especially for families affected by mitochondrial disease. Their child may have received a diagnosis for the condition, or have suspected mito but with no confirmed diagnosis. Or they may have lost a child or children to mitochondrial disease.

Relive the highlights of last year’s unforgettable family weekend! Discover the moments that brought the mito community together – read the review.

The Lily Family Support Weekend is currently held once a year in either June or July. To find out more please email [email protected].