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Fighting mito,
finding hope.

News

There’s plenty going on in the world of mitochondrial disease, and you can learn all about our work and read the latest news articles and blogs from across all areas of our charity here.

From personal stories about families affected by the disease to the latest research projects and plenty more, why not sign up to our newsletters, and follow us on social media, to ensure you never miss a thing.

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Support 2 December 2023

When we think there are no words, let’s start talking

As many of us come together with family and friends at Christmas, it’s a time to reflect on those we love as well as those we’ve lost. To mark National Grief Awareness Week (2nd-8th December) we spoke with Consultant Clinical Neuropsychologist Dr Ben Marram about loss and how to deal with it. Because we will all, within the mito community and without, experience grief and loss of some kind during our lives.

Support 17 April 2023

Celebrating 15 years of… patient advocacy

One of the reasons The Lily Foundation exists is to help give a voice to mito patients and their families, to enable them to have a say in the services and support available. A lot has changed in the last 15 years, and we’re proud of the progress we’ve made, but we don’t intend to rest on our laurels, because understanding mitochondrial disease is the key to unlocking effective treatments and that eventual cure.

Support 14 April 2023

Your money matters for Lily’s newest recruit

As part of our mission to support families affected by mitochondrial disease, we believe that should cover financial support too. So we’re delighted to welcome our new Benefits Advisor, Chrissy, to the Lily team. We caught up with her to see how she’s planning to help mito patients and their families navigate the tricky topic of financial welfare.

Support 30 March 2023

Celebrating 15 years of... Lily friendship

Being diagnosed with mitochondrial disease can be not only a frightening and upsetting time, but it can also be very lonely. Because mito is so rare, sometimes friends and family just don't understand, so it’s hard to find people who are in the same situation to talk to, to share hopes and fears with, and find support. And that’s why The Lily Foundation have been bringing people together for the last 15 years.

Support 27 February 2023

Lily Wish Fund

For 15 years now we’ve been providing much-needed support to sufferers of mitochondrial disease, their families and carers. There are lots of ways to make the lives of affected families easier and more enjoyable, but they can come at a price. And that’s why we’re delighted to launch the Lily Wish Fund.

Support 3 February 2023

"The one place we can be ourselves"

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.

Support 27 January 2022

Lily joins BearHugs scheme to deliver joy to those who need it most

One of the worst aspects of living with a mitochondrial disease, or in fact any serious illness, is the terrible feeling of isolation it can cause. As the Covid pandemic has shown, being stuck indoors day after day, denied physical activities and opportunities to socialise, can quickly become a living hell. A single moment of connection and warmth can make a huge difference.