HOME

14 November 2023

Every day people are carrying out good deeds so we decided to celebrate the great work that charities, community groups and campaigners do with a regular feature on Tuesdays, to tie-in with #CharityTuesday on social media.

This week, we caught up with charity The Lily Foundation to find out more.

Where are you based and what geographical areas do you support people in?
Our team all work remotely and are spread across the UK, although our founder, Liz, and several members of the team are based in Warlingham in Surrey. However, we all come together regularly for events, fundraising opportunities and to support patients and families affected by mitochondrial disease, or ‘mito’. The patients we support are also scattered all over the UK, often not living near or knowing anyone else affected by this disease, and that makes the support we offer even more important.

How do you support people?
We are really proud of the support services we offer at Lily. We currently support over 1200 patients and families in the UK. We offer one-to-one practical and emotional support over the phone and via email, we have private Facebook support groups for adults and families to connect, and we also host a weekly virtual coffee morning which all help to provide a safe space for people affected by mito to ask questions, get advice and feel part of a community that understands them.

We run two large in-person events every year: our annual Lily Family Weekend and Young Adult Weekend. Both are designed to bring people together to connect with one another, share their experiences of mito and form long-lasting friendships. The Family Weekend is filled with informative talks and workshops for parents from some of the UK’s top mitochondrial experts, with plenty of activities to keep the children entertained. Meals are all taken care of, and there are plenty of Lily staff and volunteers on hand, so parents have a real opportunity to enjoy some much-needed time off, chat with the professionals but also meet like-minded people in similar positions.

And the Young Adult Weekend is an action-packed occasion where young adults with mito and any accompanying family members or carers get to enjoy a range of activities like cycling, bushcraft, rock climbing and zip wiring, all made accessible to everyone. In the evenings there are get-togethers, where everyone enjoys socialising with like-minded young people and the challenge of getting out of their comfort zone a bit!

We have a grant scheme called the Lily Wish Fund, which was set up to provide much-needed support to sufferers of mito and those around them. Every three months, people are given the chance to apply for money to help fund something to improve their lives – that might be an adapted trike, pushchair or all-terrain buggy to give a child the chance to play outdoors and have more independence; it could be help with making changes to a home or garden to ease accessibility issues; or it might be to fund a weekend away or a respite break.

We also support Patient Information Days organised by the NHS and give presentations to medical teams to raise awareness of the support that we offer to families affected by mito.

How did you come to be founded?
It was set up over 15 years ago by our founder and CEO, Liz, after she lost her daughter Lily to mitochondrial disease when she was just 8 months old. At the time that Lily was diagnosed, Liz found little in the way of information available about mito, and no support networks for families. There was hardly any research going on into mitochondrial disease, and what information was out there was written by doctors, for doctors. So, together with the support of her family, Liz decided to set up a charity to try to make sure that no other family had to face a diagnosis of mitochondrial disease alone, and in October 2007, The Lily Foundation was born.

Mitochondrial disease is still unknown to many people, despite it being the second most common genetic disorder after cystic fibrosis. Our mitochondria are essentially the tiny organelles within our cells that generate most of the energy we require to function. Without healthy mitochondria, cells cannot function properly, and the results can be debilitating and eventually life-ending. It’s a very complex and difficult-to-diagnose condition that affects people in very different ways. It often affects babies and young children, and the long-term prognosis for sufferers is poor. There is currently no cure, but we are working hard to change this.

How many people do you have working at The Lily Foundation?
Today there are 12 of us working directly for the charity in various full and part time roles, all working remotely around the UK. There are many other individuals connected with the charity in various roles within medical research, or as charity trustees and patrons.

How can people support you?
Raising awareness of mitochondrial disease is vital if we’re to keep raising funds to drive research. We’re very active on a number of social media channels, so people can follow us, like, share and comment on our posts to help spread the word about our work. Social media is a key way that many of our patients keep in touch and engage with one another, and remains a huge part of the community we’ve built, so we love to see new followers!

The other way people can help is by making a donation. Whether people would like to give to help support families, or donate towards our current research projects, every penny received goes towards improving the lives of those affected by mitochondrial disease.

Have you faced any challenges along the way?
Of course! But we’re all passionate about the work we do and have the determination to overcome any obstacles put in our way. The biggest challenge we’ve faced, and still face on an ongoing basis, is the fact that mitochondrial disease is so rare, and many people have never heard of it, while others still know very little about it. It’s difficult to quickly encapsulate to people what we do when there’s always an element of lengthy explanation involved.

That’s true when it comes to raising awareness about our charity and the work we do, but it’s also true when we talk about the research we fund. Although we are making progress, and breakthroughs do take place from time to time, there’s still so much not understood about our mitochondria and the way they work, even within the medical world. If we’re going to get closer to our ultimate vision, which is for a world where there are treatments and a cure for mito, we have to learn more about the condition.

Do you have any events coming up and where can people find out about these events?
There’s always plenty going on in the Lily calendar, especially at this time of the year. We’ve just released tickets for our annual Comedy Night at London’s Comedy Store next February, and tickets for our fundraising gala ball will be going on sale shortly.

We also host a Lily Fight Night in May, which sees rookie boxers taking one another on to raise funds – anyone is welcome to apply to fight, and tickets to go and spectate will be on sale early next year.

We secure places for most large fundraising events such as the London Marathon and the Great North Run, however these do sell out quickly, so we also encourage supporters to apply for their own place at any national or regional event, and we’re always happy to help in arranging any fundraiser, however large or small.

You can find a full list of our events on our website, or follow our social media channels to keep up to date with everything in the Lily calendar!

Is there any advice you could give to other agencies?
Start with clear focus areas to raise money in, and grow at a rate that is comfortable to still be able to reach your goals. When we first started, Lily was the only person we knew of who had mitochondrial disease, and gradually numbers have increased to the extent that we now support over 1200 families.

And always stay in touch with your community to understand their needs and respond to new developments. Although patients and team members are scattered all over the country, we have a very close-knit community and people are very quick to tell us what they want (and what they don’t want!). The minute you stop listening is the moment you’ll lose your way.

You can find out more about The Lily Foundation on their website or via Facebook, Instagram, Threads, X (Twitter) or YouTube.