Outsmarting a syndrome
16 October 2018
How do you smuggle health-giving enzymes past the body's natural immune system? A Lily-funded project to develop a therapy for MNGIE syndrome is tackling that problem, and looks set to expand scientific understanding of mitochondrial disease in the process. We hear from Dr Bridget Bax, the project's principal investigator at St George's University in London, and postdoctoral research assistant Michelle Levene.
5 Great Reasons To Run The London Marathon For Lily
9 October 2018
Already booked your place in the 2019 London Marathon? From dedicated cheering squads to a free massage, here are 5 great reasons to run for The Lily Foundation and help fight mitochondrial disease.
Members of Lily Medical Board contribute to new research into POLG disease
24 September 2018
Three members of The Lily Foundation Medical Board were part of a collaborative team who recently published a study investigating the clinical features of POLG disease in children.
771 Miles in 7 days for Charlie
13 September 2018
Charlie Withers was just 2-years-old when she lost her battle with mito. To mark Mito Awareness Week, her uncle Mike is cycling 771 miles - one for every day of Charlie's life. Charlie's dad Steve tells the story.
Global's Make Some Noise - Freddie's Story
7 September 2018
Our Make Some Noise nationwide radio campaign kicks off with the moving story of Freddie Ormrod, who was diagnosed with mito at 8 months old.
Action hero Neil targets the triple for brave James, 9
24 July 2018
Lily fundraiser Neil Harper has a London Classics medal in his sights as he takes on the RideLondon-Surrey 100 for his friend James, who has mitochondrial disease.
Meet the Researcher
12 July 2018
Eszter Dombi is part of a new generation of scientists leading the way in mitochondrial research. Here she talks about her Lily-funded research into new treatments at John Radcliffe Hospital, Oxford.
Helping from the heart
6 July 2018
NHS research nurse Colwynn Phillips talks about her Lily-funded work with patients at the Rare Mitochondrial Disorders Service in Oxford.
Lily and the NHS: A partnership worth celebrating
29 June 2018
As the National Health Service turns 70, we look at five ways The Lily Foundation works with the NHS to support people affected by mitochondrial disease.
The Lancet publishes scientific review by Lily Medical Board member Prof Shamima Rahman
28 June 2018
Leading medical journal The Lancet has published a scientific review written by Professor Shamima Rahman, a member of the Lily Foundation Medical Board. Here we offer a short summary of her paper.
The Lily Foundation launches new research into nucleoside therapy
24 June 2018
The Lily Foundation has announced funding for important new research into nucleoside therapy as a treatment for mitochondrial depletion syndromes.
Ben Carter appointed new Chair of The Lily Foundation
30 May 2018
Ben Carter, UK Marketing Director of Just Eat, appointed Chair of The Lily Foundation as Jonathan Pearce steps down
Mito conference news
24 May 2018
Find out what's happening in mitochondrial research as we report back from two scientific conferences recently attended by The Lily Foundation.
Get ready to Make Some Noise!
18 May 2018
The Lily Foundation is preparing to turn up the volume after being selected as a 2018 Make Some Noise charity.
Unlocking NR
18 May 2018
Could Nicotinamide Riboside be a potential treatment for mitochondrial disease? Dr Alex Clout talks about his Lily-funded research.
10 facts about dystonia and mitochondrial disease
4 May 2018
To mark Dystonia Awareness Week (May 5th - 13th) we've put together 10 facts about the disorder and its link to mitochondrial conditions.
What a belter! Lily Fight Night 2018 raises a record £61k
27 April 2018
Amateur boxers deal a heavyweight blow to mitochondrial disease as Lily Fight Night 2018 raises a record £61,000
Take a hike! 5 great reasons to go for a walk
26 April 2018
May is National Walking Month! Get off on the right foot with our 5 great reasons to go for a stroll.
Team Lily smashes London Marathon as £38,000 raised to fight mitochondrial disease
24 April 2018
There were sore feet, aching limbs and huge smiles all round after Team Lily put in a heroic performance at the London Marathon.
6 tips for running a hot weather marathon
19 April 2018
With the London Marathon just days away and temperatures soaring, here are six tips to help beat the heat on race day.
A marathon effort in the fight against mito
13 April 2018
As Team Lily limbers up for the 2018 London Marathon, Kat Kitto recalls how she ran the biggest race of her life for her daughter Poppy, who has mitochondrial disease.
Peter Kay charity screenings raise over £34,000 to fight mitochondrial disease
10 April 2018
Peter Kay’s charity screenings of Car Share have raised more than £34k to help fight mitochondrial disease.
Highlights from the 2018 Lily Butterfly Ball
3 April 2018
Catch up on highlights and photos from the 2018 Lily Butterfly Ball
Peter Kay to donate profits from Car Share screenings to The Lily Foundation
29 March 2018
Peter Kay has announced he will donate all profits from special screenings of Car Share to The Lily Foundation.
Lily researchers contribute to international genetics paper
26 March 2018
Lily Foundation research staff are again part of an international team whose work has been published in a leading science journal.
10 links between autism and mitochondrial disease
23 March 2018
To mark Autism Awareness Week we've put together 10 facts that highlight the links between mitochondrial disease and autism spectrum disorder (ASD).
A mountain to climb
23 March 2018
Gareth Edwards had tackled Mount Kilimanjaro and had his sights set on Everest when mitochondrial disease left him struggling to climb the stairs.
Lily Comedy Night puts the fun into fundraising
2 March 2018
Laughter really was the best medicine when the Lily Comedy Night came to London's Comedy Store.
Marathon man
23 February 2018
We catch up with Dave Merritt as he prepares to run his 11th London Marathon for The Lily Foundation, the charity set up in his daughter's name.
Living with Leigh syndrome
19 February 2018
Meet Emily, the brave teenager who won't be defined by her illness.
10 reasons why Lily loves you this Valentines Day
12 February 2018
This Valentine's Day we're telling all our wonderful supporters how much we love them. And that includes you! Read on to find out why you make our heart go pop.
First patient licence granted for mitochondrial donation
1 February 2018
Patient license granted to Wellcome Centre for Mitochondrial Research means UK is first country to legally offer pioneering IVF procedure.
10 ways to boost your fundraising
1 February 2018
To help you make the most out of your fundraising efforts we've put together 10 tips to help boost your donations and raise awareness about our cause.
A love beyond words
19 January 2018
Twins Lauren and Alex Cianfini share a unique bond that allows them to communicate without words. It's a gift that has proved invaluable in helping the family care for Alex, who has mitochondrial disease and is unable to speak.
Lily Fundraising Manager
17 January 2018
Are you innovative and passionate about making a real difference to people’s lives? Do you have the drive and enthusiasm to create new approaches to generate income? Then you are the person we are looking for to be our new Fundraising Manager.
Wanted: A prize that money can't buy
16 January 2018
Can you donate an auction prize to the 2018 Lily Ball and help fund research into mitochondrial disease?
10 running tips for beginners
9 January 2018
January is a popular time to get into the running habit, and with good reason. If you want to burn off some calories after weeks of festive indulgence, lacing up a new pair of trainers and hitting the trail is a good way to do it
Bin the gym and get MITO-VATED
2 January 2018
Want to get fit for 2018? Instead of wasting money on an expensive gym membership, why not sign up to a Lily challenge and get fit fighting mito?
The DNA detective
27 December 2017
An interview with Dr Ines Barbosa, research associate on the Lily Exome Project.
Start 2018 with an Ultra Challenge!
27 December 2017
Sign up with a friend to a Lily Ultra Challenge event by February 11th and get a 2-for-1 discount on your registration fees!
Happy Christmas from The Lily Foundation
22 December 2017
The Lily Foundation would like to say a huge thank you to all our friends, families and supporters.
Lily researchers contribute to American Medical Association paper
18 December 2017
Two Lily Foundation researchers have had their work published in a leading medical journal for the second time in two months.
UK government approves £1.6 million study into new mitochondrial disease treatment
13 December 2017
A landmark study into the benefits of using a cholesterol-lowering drug to treat patients with mitochondrial disease is set to begin clinical trials in the UK.
Brave teen Timothy has the X-Factor
4 December 2017
A teenage boy who suffers from mitochondrial disease enjoyed a day to remember after The Lily Foundation arranged for his family to meet stars from X-Factor.
Lily researchers make their mark
23 November 2017
Three young Lily-funded researchers have contributed to an article published in a respected academic journal. Lily research associates Ruth Glasgow, Kyle Thompson and Ines Barbosa were part of an international team whose findings were published in Neurogenetics.
Lucky enough to get a marathon place?
3 October 2017
Were you lucky enough to get a ballot place for the Virgin Money London Marathon 2018? We’d love you to run in support of The Lily Foundation! Here are 5 great reasons why you should........
Lily Golf Day raises £12,500
3 October 2017
Who needs the British Masters when we have our fabulous Lily Golf Day? This year's event, proved a big hit as usual, helped by blue skies and sunshine at the beautiful Croham Hurst Golf Club in Surrey.
Racing to beat mito
3 October 2017
Congratulations to our daring duo Jon Milne and Sailor Swift, who have made a great start to their circumnavigation of the globe in aid of Lily Foundation. Jon and his teddy bear sidekick, who are sailing in the Clipper Round The World yacht race to raise awareness about mitochondrial disease, have already raised over £1000 on the first leg of their voyage.
Lily Research News
3 October 2017
Supporting medical research into mitochondrial disease is a key part of our work at The Lily Foundation. It's consistent with our long term goal of finding a cure for mito, and also brings life-changing benefits to people who are living with the disease today. Starting this month, we're going to be bringing you more news about the research studies we fund, and introducing you to some of the doctors and scientists involved. We kick off here with a look at a promising study underway at University College London.
Mito Awareness Week a toe-tal success!
3 October 2017
The Lily 'Bare Your Sole' campaign for Mitochondrial Disease Awareness Week was a big success, raising awareness in homes, schools, hospitals and businesses across the country.
Blood test could help simplify diagnosis of Mitochondrial Disease
1 September 2017
A recent study has reported that levels of FGF-21 in blood could prove useful in the diagnosis of Mitochondrial Disease, leading to an improved diagnostic pathway that reduces the need for muscle biopsy
Charlie Gard
25 July 2017
Our thoughts and prayers are with Chris Gard, Connie Yates and of course their son Charlie today, as they have been for the last 8 months.
The past months have been a painful reminder for many families who have had to face similar or the same terrible sadness for their children and also a stark reminder for those who may have to face such sadness in the future. These are heart-breaking situations that no parent or child should ever ever have to face.
Mitochondrial Disease is a truly horrible disease for which there is currently no cure.
Yesterday was the culmination of events which highlighted that more research is critically needed and that we must continue to fight to make sure that we do find a cure for Mitochondrial Disease.
Highlights of Euromit 2017
17 July 2017
We are excited to share some recent updates on the diagnosis and potential treatments of Mitochondrial Disease which were discussed at the Patient Meeting of Euromit 2017 in Cologne, Germany.
Epilepsy & Mitochondrial Disease
31 May 2017
Is there a link between Mitochondrial Disease and epilepsy?
Hypoxia treatment reverses brain damage in a mouse model of Leigh syndrome
4 May 2017
A recent study has shown that breathing air with low levels of oxygen could improve survival and reverse brain damage associated with Mitochondrial Disease in a mouse model of Leigh Syndrome.
Neuromuscular Translation Research Conference 2017
4 May 2017
Exciting updates on potential treatments to help in the fight against Mitochondrial Disease from the 10th Neuromuscular Translational Conference in London.
Dystonia Awareness Week
4 May 2017
Interesting research of movement disorders in Mitochondrial Disease.