Living with mitochondrial disease
12 February 2020
When a child has severe disabilities, the support provided by an attentive sibling not only helps take the strain off busy parents, it can also work developmental wonders. We talked to Jemma Gregory about the bond between her children Isabelle, 8, who has a mitochondrial disorder, and Isaac, 10, who is devoted to her care.
Charities grant £137,000 for Leigh syndrome research
12 February 2020
Lily has collaborated with international mitochondrial disease charities to award grants totalling £137,000 GBP to researchers working to improve the lives of people with Leigh syndrome.
A good giggle for a great cause
12 February 2020
Another fantastic evening at The Comedy Store raised funds, awareness, and of course a whole lot of laughs! Check out our slideshow of pictures from the night.
Ben's Binned the Gym!
16 January 2020
Lily Chairman, Ben Carter is running a half marathon for Lily – and following it up by climbing Mount Kilimanjaro.
Lily supports MDUK in funding trials of potential mito drug
15 January 2020
The Lily Foundation is helping to fund a pilot study to test potential treatments for mitochondrial myopathy, the most common form of mitochondrial disease.
Buddy Holly star thanks Lily for helping delay hearing loss
14 January 2020
For professional musician Jason Shaw, landing the starring role in a Buddy Holly tribute show was a dream job. When mitochondrial disease threatened to derail it, he turned to The Lily Foundation for help.
Couch to 5k running tips
8 January 2020
Personal training Jenny Dixon shares her couch-to-5k running tips for beginner runners.
Lily Research Focus
7 December 2019
Researcher Yasmin Tang talks about her Lily-funded investigation into the causes of mitochondrial disease.
Lily Young Adult Weekend
5 December 2019
Young adults with mitochondrial disease enjoyed a 'simply brilliant' weekend in the Lake District when the Lily Foundation held its first ever Young Adult Weekend.
Charity and business - a mutually beneficial partnership
4 December 2019
Dean Curtis, the newest member of our Board of Directors, on why there's never been a better time for businesses and charities to work together.
'We call her our miracle baby'
3 December 2019
Sophie Carr thought that mitochondrial disease would prevent her from ever having children. Then little Freya arrived, and changed her whole world.
NHS publishes physiotherapy guidance for mito patients
13 November 2019
Physiotherapists can now access guidance on how to treat people with mitochondrial diseases, thanks to an NHS-led project involving The Lily Foundation.
Keeping the light burning: A mother's personal journey through baby loss
13 November 2019
Last November, Hannah Chapman and her partner Ben Keverne lost their six-month-old daughter Maisie to mitochondrial disease. In the wake of Baby Loss Awareness Week, we asked her to share her thoughts and feelings as she prepares for the first anniversary of Maisie's death.
Lily Research Focus
11 November 2019
Mitochondrial gene editing is a promising therapeutic technology in the field of mitochondrial disease.
Lily receives Lottery grant for Patient Days
22 October 2019
The Lily Foundation has received a National Lottery grant to help expand its Patient Engagement Day (PED) programme for people affected by mitochondrial disease.
Tim Vine to host 2020 Lily Foundation Ball
22 October 2019
The Lily Foundation is proud and delighted to announce one of the UK's top comedians, Tim Vine as host of our 2020 Lily Ball.
Adults with mito get connected at Patient Engagement Day
21 October 2019
Adults with mito were given support, information and chance to connect at a Patient Engagement Day co-hosted by The Lily Foundation.
Lily Research Focus: Enzyme Replacement Therapy
16 October 2019
In the first of a new series of quick guides to Lily research projects, we look at an innovative treatment for MNGIE syndrome that's making waves internationally.
Lily to bring patient voice to world's biggest mito conference
4 October 2019
The Lily Foundation is proud to announce its partnership with Euromit 2020, the world's largest ever international conference on mitochondrial disease, which will be held in Newcastle, UK next summer.
'Best ever' Awareness Week puts mito in the spotlight
30 September 2019
The Lily Foundation would like to say a huge THANK YOU to everyone who participated in Global Mitochondrial Disease Awareness Week 2019. The event was a resounding success, raising awareness about mito around the world.
Stuart Connor dedicates British shearing record to daughter Grace
23 September 2019
Oxfordshire farmer Stuart Connor has set a new British shearing record, dedicating his achievement to his three-year-old daughter Grace, who died from mitochondrial disease last year.
UK landmarks light up green to raise awareness about mito
13 September 2019
Battersea Power Station, Mersey Gateway Bridge, Leeds Castle and Blackpool Tower are among major UK landmarks lighting up green this week to raise awareness about mitochondrial disease.
Lily Foundation unites with global charities to give hope to Leigh syndrome patients
12 September 2019
The Lily Foundation is proud to be member of the Leigh Syndrome International Consortium, a newly formed group of international rare disease charities committed to improving clinical care for Leigh syndrome patients around the world.
Q&A with our Disability Benefits Advisor
30 August 2019
Lily's Disability & Employment Benefits advisor, Rosemary Bell, talks about the vital service she provides to mito patients struggling to navigate the benefits system.
Mito families unite for 6th annual Lily Family Weekend
17 July 2019
60 families affected by mitochondrial disease came together at Chesford Grange to share experiences and get advice from leading specialists in the field of mitochondrial medicine.
Jackpot! Amazing Alan wins big for The Lily Foundation
8 July 2019
TV star Alan Davies has won £20,000 for The Lily Foundation after scooping the jackpot on Tipping Point: Lucky Stars.
Carers Week, 10-16 June
5 June 2019
My daughter has mitochondrial disease and being her full-time carer is heartbreaking – sometimes I just want to be her mum, writes Angela Jakubowski
Lily announces partnership with Wellcome Centre for Mitochondrial Research
28 May 2019
The Lily Foundation and the Wellcome Centre for Mitochondrial Research (WCMR) have announced a strategic partnership to improve the lives of people affected by mitochondrial disease.
Walking for Sebby
17 May 2019
After losing her young son to mitochondrial disease, walking hundreds of miles in his memory helped Melissa Streete cope with grief and raise awareness about the condition that took his life.
PREFER: Patient preferences in new drug research
14 May 2019
Mitochondrial patients and caregivers have been integral in helping guide the development of potential treatments for mitochondrial disease as part of the first phase of the PREFER study.
Q&A with Dr Alex Dorenbaum
30 April 2019
As trials begin for a new medicine to treat mitochondrial myopathy, we talk to the Chief Medical Officer of Reneo Pharmaceuticals about his hopes for the drug and why his company is working with The Lily Foundation.
Cheque this out! Jamie stuns Lily Ball with surprise £100,000 donation
18 April 2019
Hearts melted at the Lily Chocolate Charity Ball when Jamie Theakston presented a £100,000 cheque to help support people affected by mitochondrial disease.
Prof Sir Doug Turnbull joins likes of Newton and Einstein as Fellow of the Royal Society
17 April 2019
Prof Sir Doug Turnbull, Director of the Wellcome Centre for Mitochondrial Research and a long-serving member of The Lily Foundation Medical Board, has been named a Fellow of the Royal Society.
Newcastle Patient Information Day 2019
12 April 2019
The Lily team was in Newcastle last weekend for a Patient Information Day hosted by the Wellcome Centre for Mitochondrial Research.
Empowering patients in the fight against mito
10 April 2019
As healthcare providers increasingly turn to patients and their families for expert input, we look at The Lily Foundation's role in promoting patient advocacy.
Lily announces a further £250,000 of funding for new research into mitochondrial disease
20 March 2019
The Lily Foundation has awarded research grants totalling £250,000 to three new scientific studies that aim to improve the lives of people with mitochondrial disease.
Brain Awareness Week & British Science Week 2019
12 March 2019
This week is Brain Awareness Week and British Science Week. We talked to Shane Bell, a PhD student at the Wellcome Centre for Mitochondrial Research at Newcastle University, about his research that aims to improve mitochondrial function in brain cells.
The sky's the limit: Taking the fear factor out of disabled-friendly travel
11 March 2019
Planning a disabled-friendly holiday can feel nerve-wracking, but with the right know-how the sky's the limit, writes Karen Cianfini.
International Women's Day
8 March 2019
I went from planning the end of my life to being a voice for other disabled and disadvantaged people. Here's what International Women's Day means to me. By Lucy Watts MBE
Let's hear it for amazing mito mums this Mother's Day
4 March 2019
Do you know an amazing mother to a child with mitochondrial disease? Share her story this Mother's Day and help raise awareness.
Will you run the Vitality London 10k for Lily?
4 March 2019
Are you a Lily Foundation supporter with a serious case of the running bug? If so you could be just the person we're looking for.
Get on your bike for Lily
1 March 2019
Have you got pedal power? Sign up to Prudential Ride London 2019 as a Lily supporter and we'll back you all the way.
The long road to diagnosis
27 February 2019
Harry Cozens has been living with MERRF syndrome all his life, but it took nearly 20 years for his illness to be correctly diagnosed. We talked to Harry and his mother, Mandy Norris, about an ordeal all too common for adults with a mitochondrial disease.
A Lily love story
11 February 2019
Let the Valentine's Day vibes wash over you with this moving video of Sophie and Jamie's wedding.
5 exercises to make you a stronger runner
6 February 2019
Running coach Jenny Dixon gives her top 5 exercises to make you a stronger, less injury prone runner.
Enzyme replacement therapy for MNGIE patients approved for clinical trials in UK
4 February 2019
A Lily-funded project to develop a therapy for MNGIE syndrome has been approved for clinical trials in the UK, and could become the first effective treatment for this form of mitochondrial disease.
The Lily Foundation attends 45th Annual BPNA Conference
1 February 2019
The Lily Foundation was in Liverpool last week to attend the 45th British Paediatric Neurology Association Annual Conference 2019.
Take a leap for Lily
29 January 2019
Looking for a thrilling way to raise money for Lily? Try jumping out of a plane at 2000 feet, writes Morgan Gillam.
My son the young carer
25 January 2019
Why I'm so proud of my son, a young carer who has made huge sacrifices for his brother who has mitochondrial disease.
How to improve your running posture
18 January 2019
Good posture is key to an efficient, comfortable running style. Use these expert tips and video from personal trainer Jenny Dixon to transform your training today.
Warm-up act
10 January 2019
Personal trainer Jenny Dixon shares her warm-up routine for beginner runners, with some easy dynamic stretches to help keep you limber in cold weather.
How you can help us raise £100,000
5 December 2018
Can you help us smash our £100,000 fundraising target at the 2019 Lily Ball? Check out our great value partnership opportunities and help make a difference for families affected by mito.
Lily teams up with NHS specialists in Oxford to share clinical expertise on child mito cases
5 December 2018
Lily teams up with NHS specialists in Oxford to share clinical expertise on child mito cases
Lily Foundation co-hosts Patient Information Days for adults affected by mito
3 December 2018
The Lily Foundation is reaching out to adults affected by mito with co-hosted Patient Information Days
Take aim at mito with a Lily darts night at Flight Club
26 November 2018
Flight Club is a brand new Lily event that takes the competitive fun of pub darts to a whole other level. Bring a team of friends along and let's take aim at mito!
Lily Comedy Night tickets go on sale on Dec 3rd!
23 November 2018
Tickets are now available for Lily Comedy Night 2019, with Alan Davies and Romesh Ranganathan among a host of top acts scheduled to perform on the night.
5 easy ways to support Lily this festive season
21 November 2018
Give families affected by mito the gift of hope this Christmas with these simple fundraising tips.
The hardest journey
13 November 2018
Oxfordshire wool producer Stuart Connor on how competitive shearing helped him cope with the tragedy of losing his daughter to mitochondrial disease.
Lily backs initiative to improve information on potential risks of mito drugs
5 November 2018
Members of The Lily Foundation Medical Board were among experts from across the mitochondrial field who attended a conference addressing the issue of potentially harmful drugs used by mitochondrial patients.
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.
The Lily Foundation announces £234k funding for new research into mitochondrial disease treatments
20 April 2018
The Lily Foundation is proud to announce a £234,000 funding initiative supporting three new studies into treatments for mitochondrial disease.
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.
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.