When we think there are no words, let’s start talking
2 December 2023
Christmas is a time to reflect on those we love as well as those we’ve lost, so 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.
Lily-sponsored researcher wins prize for mitochondrial disease thesis
9 November 2023
Back in December 2019, we were delighted to announce the latest addition to our Lily-funded research team, PhD student Yasmin Tang. Nearly four years on, not only has Yasmin completed her PhD but she’s been awarded the Faculty Doctoral Thesis Prize for her studies. Proof that we only back the best here at The Lily Foundation!
Spreading the word about Lily to the professionals
7 November 2023
Raising awareness about mitochondrial disease, and about The Lily Foundation, is always top of our agenda so we were delighted to accept an invitation to talk about our work at the Annual Cambridge Paediatric Mitochondrial Meeting earlier in November.
Behind every good charity is a great board of trustees
6 November 2023
Charities are overseen by their board of trustees, who lead the organisation and decide how it’s run. To mark the occasion of Trustees Week (6th-10th November), we spoke to one of ours, Claire, about why she joined our board and what she gets out of the role.
Something EPIC has arrived
26 October 2023
Research is the key to finding treatments and an eventual cure for mito, and we believe the real experts are the people living with the disease. That’s why we’re launching a new Expert Patient Input Committee – in short, EPIC: a committee made up entirely of people affected by mito who are willing to share their experiences to help shape research, clinical care and treatments.
Newcastle Patient Information Day 2023
20 October 2023
With Newcastle’s last Patient Information Day having taken place back in 2019, it was clear by the attendance this year that mitochondrial disease patients were delighted to have this social engagement back on the calendar. As were we, since it offers us a great chance to raise awareness amongst patients about our support services.
Breaking the silence about the lives that could have been
9 October 2023
Losing a baby is one of the hardest things any parent will ever go through. To mark the occasion of Baby Loss Awareness Week from 9th-15th October, we spoke with Beth about losing her baby son to mito and how she still carries her grief with her over 13 years later.
Friendship, fun and unforgettable adventures!
3 October 2023
What better way to feel part of a community than by gathering together for a weekend of shared physical challenges and emotional support in a stunning location. That’s exactly what motivated 18 young adult mito patients to head to the beautiful Lake District for the Lily Young Adult Weekend recently.
Mito awareness week – spreading the word far and wide, loud and clear
27 September 2023
A huge thank you to everyone who got involved in events before and during World Mitochondrial Disease Week earlier this month. You all did your bit to put mito on the map and help make this year’s awareness week bigger and better than ever before!
Making a difference through personal experience
26 September 2023
Last week, BBC Points West ran a story about team member Sarah, who came across The Lily Foundation back in 2018 after losing her two daughters to mitochondrial disease. She immediately began helping families affected by mito, before becoming team Lily’s Corporate Fundraiser.
Lily founder honoured at star-studded awards ceremony
24 September 2023
Everyone at Lily HQ was delighted to hear the exciting news that our founder and CEO, Liz, was honoured with a National Lottery Local Health Hero Award at The Sun’s recent Who Cares Wins awards.
Shining the spotlight on an inspirational Royal Parks runner
18 September 2023
Every summer the organisers of the Royal Parks Half Marathon launch their Inspire campaign to seek out five inspirational runners, and this year one of their winners is Lily supporter Reanna, whose daughter Milanna was diagnosed with mitochondrial disease at the age of 7 months.
Original approaches in the quest for a cure
12 September 2023
The landscape around mitochondrial research is changing all the time as new approaches are considered and new projects undertaken, and we spoke with mitochondrial specialist Bert Smeets about how a trial using stem cells to treat muscle damage in mitochondrial myopathy patients could help in mitochondrial care.
Hope for future mito research on the horizon
12 September 2023
Everyone at The Lily Foundation was delighted to hear the recent news that the UK is to rejoin Horizon Europe, the EU’s key funding programme for research and innovation. Being back in the fold will mean exciting new opportunities for UK-based researchers.
Remembering Lily on her 17th birthday
4 September 2023
Last month would have been Lily’s 17th birthday, and to mark such a poignant milestone, founder and CEO Liz spoke with Yahoo News about how the charity first began and why she’s still working so hard all these years later to raise awareness about mito in Lily’s memory.
Improving the lives of mito patients with epilepsy
3 August 2023
We know through our mito patients and families that there’s a pressing need to develop epilepsy best practice guidelines, so Alison, The Lily Foundation’s Head of Research, was delighted to pack her suitcase and head over to Budapest to represent the charity at a recent global epilepsy best practice workshop.
Wild horses couldn’t keep us away from the Lily Family Weekend!
27 July 2023
End-of-term traffic jams, train strikes, unseasonal weather and wild horses couldn’t stop around 60 mito families from coming together with medical experts, Lily staff and volunteers for this year’s highly anticipated Family Weekend.
Celebrating 15 years of… partnerships
26 July 2023
As we continue to celebrate our milestone 15th year improving the lives of mito patients, this month we’re focusing on the partnerships we’ve created over those 15 years that have helped us build our charity and expand the mito community at home and around the world.
A pleasure doing business with you
26 July 2023
The Lily Foundation have a number of corporate connections who help us raise funds, and one such connection is with family-run business Mandarin Stone and their founder Alma Small. And whilst this is a corporate relationship, there’s a very personal reason why Alma donates to us year after year.
Hearing the patient voice loud and clear at Euromit
23 June 2023
June saw the arrival once again of Euromit, the leading international conference on mitochondrial diseases. And there was a clear theme running through the event’s proceedings – the growing appreciation of the patient voice.
A blooming display at Bath shopping centre this summer
6 June 2023
Every summer SouthGate Bath is transformed into a bright and vibrant floral spectacle, and this year we’re delighted that they’ve chosen The Lily Foundation as their charity partner to work with.
Blurring the lines between partner and carer
31 May 2023
Sometimes the line between partner and carer can become blurred, and that’s certainly the case for Josey, who’s married to Chris but has felt more like a full-time carer than a wife since his mito diagnosis. With Carers Week taking place in June, we wanted to highlight some of the challenges unpaid carers face and recognise the quiet contributions they make to society.
“Hopefully I can help make people feel less alone”
25 May 2023
Every volunteer has a story to tell, so to mark Volunteers’ Week from 1st to 7th June we spoke to Becca, who regularly gives up her time to help The Lily Foundation. She told us about her motivations and how she benefits from the experience just as much as the charity does.
Unlocking the secrets of mitochondrial disease with biomarkers
24 May 2023
As we know all too well, mitochondrial disease is a bit of a mystery. We don’t yet fully understand why it presents differently and progresses differently in individuals, nor do we know how to best treat and ultimately cure it. However we believe that biomarkers could hold the key to better understanding of this rare disease.
Couple aim for new heights in remarkable fundraising journey
17 May 2023
May is National Walking Month, and two people really feeling the benefit of all that fresh air and exercise are Ami and Danny. The couple lost their baby son, Otto, to mito when he was only 4 months old, and since that tragic day they’ve been on a fundraising journey in his memory that will soon see them reaching new heights by summiting the highest mountain in Wales.
Celebrating a medical breakthrough that could give affected families hope
10 May 2023
We're delighted to read that in a UK first at least one baby has now been born using a pioneering IVF technique known as ‘mitochondrial donation’. This is a huge step forward in the fight against devastating mitochondrial diseases, which are life-limiting genetic conditions for which there is currently no cure.
50 fabulous fundraisers smash six-figure sum at London Marathon
9 May 2023
It may have been a soggy one at this year’s London Marathon, but the rain didn’t dampen the spirits of our amazing runners, nor those of our rowdy cheer squads who yelled and shouted from beneath umbrellas and waterproofs to spur our athletes along the 26.2-mile course.
Lily Fight Night packs a punch to raise over £18,000
4 May 2023
There’s always a sense of anticipation leading up to Lily Fight Night, and this year was no different. Over 350 spectators packed into The Clapham Grand, eager to watch our fundraising fighters, with many more tuning in to enjoy the action via our YouTube live stream. And the evening certainly lived up to expectations!
10 facts about dystonia and mitochondrial disease
3 May 2023
To mark Dystonia Awareness Week (3rd - 11th May) we are sharing 10 facts about the disorder and its link to mitochondrial conditions.
We’re making mito a global topic
21 April 2023
We know how tough it is to get a mito diagnosis here in the UK, so imagine living somewhere like Zambia, Brazil, India or Turkey – it must be almost impossible to get answers. Imagine if there was a network that connected these less-developed communities with our more advanced patient resources, information and expertise. That was right up there as our charity mission when we attended the 16th UK Neuromuscular Translational Research Conference at UCL last month.
Celebrating 15 years of… patient advocacy
17 April 2023
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.
The mito ‘action man’ with a mountain to climb
14 April 2023
If you couldn’t walk, couldn’t see properly and were hampered by a severe lack of energy, climbing a mountain probably wouldn’t be top of your ‘to do’ list. Not so for mito patient Ian, who has set himself the remarkable challenge of summiting Snowdon this summer.
Money matters for Lily’s newest recruit
14 April 2023
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.
Unfinished business at the London Marathon
6 April 2023
Three years ago, on the day of her son Harry’s 10th birthday, Donna should have been running the London Marathon. But the pandemic was sweeping across the globe and the race was cancelled. Fast forward to today and Harry is about to turn 13, while Donna has some unfinished business with the race.
Meet the heavyweight hopefuls punching well above their weight
4 April 2023
It’s the biggest night in boxing history since The Rumble in the Jungle… Secure your ringside seat today to witness The Clash at the Clapham, part of the famous Lily Fight Night taking place on Thursday 27th April at the iconic Clapham Grand in London.
Celebrating 15 years of... Lily friendship
30 March 2023
As part of our anniversary, we're celebrating 15 years of friendship. That's 15 years of bringing mito patients together, connecting both the young and the old and giving them the opportunity to talk to one another about what they're going through and how they might be feeling. Here are just some of the ways we're doing this.
No one’s voice should go unheard
30 March 2023
What would you do if you knew that one day you’d no longer be able to speak? No longer be able to talk to your family or chat with your friends? That’s the harsh reality for mito patient Bal, whose voice is rapidly deteriorating, and who’s ready to spread the word about the positive effects of voice banking.
How our latest partnership is driving research forward
21 March 2023
The Lily Foundation is at the forefront of seeking treatments, and eventually a cure, for mitochondrial disease, and collaboration with others is essential in driving that research forward. One of our most exciting ongoing partnerships is with The PolG Foundation, so we spoke with the charity’s co-founder, Julie, to understand how the foundation was born and how their relationship with us has blossomed.
15th anniversary Lily Ball raises over £75,000
14 March 2023
We may have just had The Oscars but there was just as much glitz at The Lily Foundation's annual charity ball, which had its share of dazzling dresses, glamorous guests and moving speeches. But the real stars of the show were the young adults who stole everyone’s hearts with their poignant accounts of the reality of living with mitochondrial disease.
Research focus: TRANSFORM study update
13 March 2023
Katrin Bangel of The Wellcome Centre for Mitochondrial Research tells us about a study into a potentially life-changing new treatment for mito patients affected by epileptic seizures which is now ready to begin in earnest and looking for patients to take part.
Oxford Patient Information Evening 2023
10 March 2023
Last week saw the first in-person mito Patient Information Evening since the Covid pandemic, and it’s clear from the attendance – and distances travelled – that everyone was delighted to be able to come together in person once again.
“I’m just trying to keep everybody happy – myself included”
8 March 2023
Fortunately, these days we’re surrounded by women setting incredible examples to us, balancing their careers with bringing up children alongside all the other demands of modern life. But what about when those children have special needs?
Lily Wish Fund
27 February 2023
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.
Still funny after 15 years!
27 February 2023
What do you get when you cross several side-splitting stand-ups with a fantastic charity? A winning formula for the legendary Lily Comedy Night, of course!
What's it like to be rare?
13 February 2023
In lots of ways Amy’s just like any other twenty-something. But she's also very rare, because she suffers from mitochondrial disease, which is a very rare genetic disorder. It’s Rare Disease Day on February 28th, so to shine a spotlight on the millions of people around the world living with a rare disease, we asked Amy to tell us what it’s like to be rare.
The results are in from more Lily-funded research
8 February 2023
The Lily Foundation were proud to co-fund the first study to investigate the role of a Low Residue Diet (LRD) in helping to improve gut symptoms in patients with mitochondrial disease.
The medical device that’s transformed Ella’s life
7 February 2023
For some parents, learning their child needs to use a feeding tube can make them feel anxious and overwhelmed, but as part of Feeding Tube Awareness Week we wanted to share a heart-warming story that showcases the incredible benefit a feeding tube can bring.
"The one place we can be ourselves"
3 February 2023
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.
Paving the way in rare disease research
30 January 2023
The loss of her baby cousin to mitochondrial disease at only 3 months old inspired Natasha to dedicate her medical research to this condition that she and her family knew so little about.
Spreading the word on the Foundation’s work
26 January 2023
Alison Maguire (Head of Research and Finance) and Katie Waller (Science and Patient Engagement Officer) are delighted to be attending the British Paediatric Neurology Association’s 49th Annual Scientific Meeting, being held at The Royal College of Physicians of Edinburgh from the 25th-27th January 2023.
On the road with the research team
25 January 2023
It was a busy end to 2022 for Alison Maguire (Head of Research and Finance) and Katie Waller (Science and Patient Engagement Officer), who have been proudly representing The Lily Foundation at a range of recent events aimed at medical professionals, scientists and researchers.
Celebrating 15 years of… Lily Research
15 December 2022
As we celebrate our 15th anniversary year, we can feel proud of what our charity has done to advance research into mitochondrial disease.
The Lily Foundation launches Precision Diagnostics project
15 December 2022
The Lily Foundation is funding important new research to improve diagnostic rates for complex cases of mitochondrial disease, fulfilling an urgent need for patients who are unable to get a confirmed diagnosis via the NHS.
2022 - The year Lily bounced back stronger!
15 December 2022
Our CEO, Liz Curtis, looks back on a remarkable year that saw The Lily Foundation bounce back stronger than ever after the challenges of the Covid-19 pandemic.
Celebrating 15 Years of…Lily Fundraising
22 November 2022
Each month throughout our anniversary year we'll be highlighting a different asset of our charity. We kick off this month with a focus on 15 years of Lily fundraising power!
The Lily Foundation launches UK Mito Patient Registry
22 November 2022
The Lily Foundation is proud to announce the launch of a new online database that will give people with mitochondrial diseases a voice in research and care provision.
Lily Young Adult Weekend 2022
26 October 2022
Young people with mitochondrial disease enjoyed an action packed trip to the Lake District when The Lily Foundation hosted its second annual Young Adult Weekend.
Liz Curtis awarded MBE on 15th anniversary of The Lily Foundation
18 October 2022
The Lily Foundation's CEO, Liz Curtis kicked off our 15-year anniversary in style this week, with a trip to Windsor Castle to receive her MBE from Princess Anne.
Liz Curtis on 15 years of The Lily Foundation
10 October 2022
This week is Baby Loss Awareness Week, and also marks the 15th Anniversary of The Lily Foundation. Our CEO Liz Curtis reflects on a journey that began with the most painful loss and became a vital force for change and hope.
World Mitochondrial Disease Week round-up
28 September 2022
World Mitochondrial Disease Week went off with a bang as Lily supporters raised awareness across the country. Check out our round-up of the highlights!
A Patient-Centric Partnership
27 September 2022
We talk to Astellas' Chelsea Moran about the pharmaceutical firm's partnership with The Lily Foundation, and why the industry is turning its ear to mito patients.
Lily teams up with Oxford University Hospitals to host mito study day
23 August 2022
The Lily Foundation has teamed up with Oxford University Hospitals to host a study day for medical professionals caring for people with mitochondrial diseases.
Lily Research Funding Call opens September 19th
22 August 2022
The Lily Foundation's annual research call opens to applicants this September, allowing scientists studying treatments for mitochondrial diseases to apply for funding.
Lily Foundation's Katie Waller elected to IMP board
22 August 2022
The Lily Foundation is very proud to announce the election of staff member Katie Waller to the board of International Mito Patients (IMP).
Lily Family Weekend 2022
28 July 2022
Lily Family Weekend made its long-awaited return earlier this month, giving families affected by mitochondrial disease a precious chance to spend quality time together in a safe, supportive environment.
Clinical trials: a clear sign of progress in the fight against mitochondrial disease
27 July 2022
The recent rise in the number of clinical trials of treatments for mitochondrial disease shows how far we've come in the last 15 years, writes our Head of Research, Alison Maguire
World Mitochondrial Disease Week 18-24 Sept 2022
5 July 2022
Every September, hundreds of buildings around the world light up green for World Mitochondrial Disease Week. Why not get involved and ask a building in your area to take part?
Lily Fight Night takes a swing at mito with £28,000 raised
22 June 2022
The return of Lily Fight Night after a two-year absence always promised to be a big occasion, and we're delighted to report it did not disappoint!
Prof Sir Doug Turnbull becomes Patron of The Lily Foundation
21 June 2022
Professor Sir Doug Turnbull, former Director of the Wellcome Centre for Mitochondrial Research (WCMR) and one of the world's foremost experts in mitochondrial disease, has joined The Lily Foundation as Patron.
Carers Week 2022
2 June 2022
This Carers Week (6-12 June) we get an insight into the life of an unpaid carer from Nicolette Darch, who cares for her adult daughter Sian, who has mitochondrial disease.
Volunteers' Week 2022
1 June 2022
The rewards you get from volunteering make it worth every minute you spend helping out, writes one of Lily's longest-serving volunteers, Peter Bagatti.
Lily awards £178,000 of new funding for mito research
24 May 2022
The Lily Foundation has increased its research funding with grants for two exciting new projects that could improve the lives of people with mitochondrial disease.
Jim Moir among top comedians to auction artworks for Lily
18 May 2022
Jim Moir (Vic Reeves) is one of five top comedians whose artworks will be auctioned to raise money for charities including The Lily Foundation this month.
Researchers working with The Lily Foundation contribute to study of how Covid affects mito patients
17 May 2022
Researchers working with The Lily Foundation have published the results of an international study into the risks of COVID-19 in people with Primary Mitochondrial Diseases (PMDs).
International Nurses Day 2022
11 May 2022
To mark International Nurses Day (12th May) we hear from Chloe Poole, a Metabolic Clinical Nurse Specialist at Bristol Royal Hospital for Children.
Lily lorries hit the road to raise awareness about mito
11 May 2022
Two bright pink lorries bearing the logo of The Lily Foundation will be taking to British roads this month to help raise awareness about mitochondrial disease.
Living with mitochondrial disease and deafness
3 May 2022
Losing my hearing due to mitochondrial disease was frightening and lonely – until some amazing technology came to the rescue, writes Jojo Wells.
Research Focus: Professor Antonella Spinazzola
22 April 2022
We talk to pioneering neurologist Prof Antonella Spinazzola about the inspiration behind her groundbreaking mito research, and her hopes for finding a cure.
Lily Foundation represents patient interests at international GENOMIT meeting
21 April 2022
The Lily Foundation met with international mito organisations to advance patient interests and facilitate the collection of patient-reported data for research.
Fitness coach to run 3 ultra-marathons in a month for client with mito
21 April 2022
A fitness coach whose client has mitochondrial disease is aiming to run three ultra marathons in a month to raise awareness about the condition.
Josh Widdicombe gives £20,000 Tipping Point jackpot to The Lily Foundation
11 April 2022
Comedian Josh Widdicombe raised a cheer from the mito community after he won £20,000 on Tipping Point: Lucky Stars and gave it to The Lily Foundation.
Lily staff join ENMC International Workshop on Leigh Syndrome
29 March 2022
Lily Foundation staff members Alison Maguire and Katie Waller took part in an ENMC International Workshop on Leigh Syndrome over the weekend (March 25-27th). ENMA (the European Neuromuscular Centre) is a worldwide organisation that coordinates workshops focused on rare neuromuscular diseases.
Lily Foundation extends mitochondrial mental health service to adults
23 March 2022
The Lily Foundation has extended its mental health service to adults, enabling more people affected by mitochondrial disease to access the support they need.
Release your inner fundraiser! The inspiring story of a Lily family
23 March 2022
After losing their son to mitochondrial disease, Simon and Lucy Pond dedicated themselves to supporting other mito families and fundraising to find a cure. Here they share their tips on how to make a difference.
British Science Week: Why listening to patients is the key to good research
14 March 2022
A patient-first approach to research is the best hope of finding a cure for mitochondrial disease, writes our newly appointed Science and Patient Engagement Officer, Katie Waller.
International Women's Day: Interview with Prof Gráinne Gorman
7 March 2022
Prof Gráinne Gorman is Director of the Wellcome Centre for Mitochondrial Research, and a member of The Lily Foundation Medical Board. To mark International Women's Day, we spoke to Gráinne about her role at WCMR, and the work she and her team is doing to raise awareness of mitochondrial disease and find curative therapies.
Meet the new members of our Lily team
22 February 2022
To help us continue to meet our mission goals, we've added some talented new people to our team. They include some familiar faces, as well as some new friends to welcome into the family!
Study co-funded by Lily uses gene-editing to modify mitochondrial genome in live mice
21 February 2022
Scientists at the University of Cambridge have shown that it is possible to modify the mitochondrial genome in live mice. Their findings could pave the way for new treatments for incurable mitochondrial disorders.
The case for making mitochondrial health part of 'everyday medicine'
21 February 2022
A growing number of scientists believe it's time to stop viewing mitochondrial health as a niche field and make it part of everyday healthcare. Professor Ana Andreazza is one of those trying to get the message out.
Lily joins BearHugs scheme to deliver joy to those who need it most
27 January 2022
The Lily Foundation is now a charity partner of BearHugs, a company that makes it easy to send joy where it's needed most.
Research Focus: MIT-E Clinical Trial
27 January 2022
Clinical trials of a drug that could treat seizures in people with mitochondrial diseases are set to begin in the UK. We talked to Matthew Klein of PTC Therapeutics to find out more.
A Christmas Message from The Lily Foundation
23 December 2021
Thanks to your incredible support, 2021 turned out to be the year The Lily Foundation bounced back stronger, better and busier than ever!
Meet the Medical Board: Prof Joanna Poulton
23 December 2021
We're sharing some short Q&As with our Medical Board members, to give an insight into their roles and find out what its like to work at the leading edge of mitochondrial research. This month we meet Professor Joanna Poulton, Honorary Consultant in Mitochondrial Genetics at Nuffield Dept of Women's & Reproductive Health, University of Oxford.
'Magical Owl Tree' raises £4000 for mito families
22 December 2021
Our supporters are always coming up with new and creative ways to raise funds and awareness about mitochondrial disease. None more so than Michael and Maxine Heyburn, who have raised over £4000 by transforming an old ash tree into a beautiful owl sculpture.
Lily Ball raises over £85,000 for young adults affected by mito
7 December 2021
The guest list may have been studded with soap stars, but it was young people fighting serious illness who the stole the show at The Lily Foundation's annual charity ball.
Bendac Group lights up lives as Lily corporate partner
25 November 2021
We're delighted to share the fantastic news that Bendac Group has joined The Lily Foundation as a corporate partner.
Why I made the leap into Lily fundraising
25 November 2021
I couldn't save my two daughters from mitochondrial disease, but now I'm doing what I can to help others, writes skydiving Lily fundraiser Sarah Moore.
"I'm so grateful that Emma's part of my work every day."
26 October 2021
Christine Beal, co-founder and chair of My Mito Mission, on coping with loss, taking her daughter's legacy forward, and why mitochondrial research is worth shouting about.
Innovative Licensing and Access Pathway will smooth approval process for rare disease medicines
23 September 2021
The Lily Foundation is actively representing the interests of mito patients in a major overhaul of regulations to speed up the process of how new medicines are approved and made available through the NHS.
RUDY: The next step in patient-powered research
18 August 2021
The Lily Foundation is proud to be funding the Rare and Undiagnosed Diseases Study (RUDY), a groundbreaking mitochondrial research tool that puts patients in the driving seat.
Getting results: The story of Lily Exome Sequencing
18 August 2021
How The Lily Foundation worked with the NHS to support families affected by mitochondrial disease. With Professor Rob Taylor and Dr Charulata Deshpande.
How Lily Research changed our lives
12 August 2021
When we lost our first child to mitochondrial disease we feared we'd never be able to have more, but thanks to The Lily Foundation we now have the family we always wanted, writes Claire Tranter.
Lily-funded research contributes to study into cellular disorders
27 July 2021
Scientists working with The Lily Foundation have published a new study that could help advance the development of treatments for many serious conditions including neurodegenerative disorders.
Research Focus: The Leigh Syndrome International Consortium
24 June 2021
Since the inception of the Leigh Syndrome International Consortium in 2018, we’ve received a number of questions about the organisations involved and the goal of the collaboration. We hope these Frequently Asked Questions will provide better insight into who we are and what we’re working hard to accomplish.
Happy as Harry
23 June 2021
12-year-old Harry Johnson has Leigh syndrome, a form of mitochondrial disease. We hear from his mum, Lucy Johnson on learning to live with the condition and what it's like to have a child diagnosed.
Liz Curtis awarded MBE for charity's work fighting mitochondrial disease
8 June 2021
Liz Curtis, Founder and CEO of The Lily Foundation, has been awarded an MBE in The Queen’s Birthday Honours list for her services to people with mitochondrial disease.
Research Focus: Mito and Neuropsychiatric Disorders
25 May 2021
The Lily Foundation is co-funding research into mitochondrial disease and mood disorders that could change the way we treat mental health in mito patients. Dr Alessandro Colasanti, Senior Clinical Lecturer and Honorary Consultant in Psychiatry at Brighton and Sussex Medical School and Sussex Partnership NHS Foundation Trust, is one of the researchers leading the study.
Research Focus: TRANSFORM therapy
3 May 2021
Dr Albert Lim of The Wellcome Centre for Mitochondrial Research tells us about a potentially life-changing new treatment for mito patients affected by epileptic seizures.
Mito, lockdown and social isolation
23 March 2021
For people with mitochondrial disease, the Covid lockdown has added to a sense of isolation that's all too familiar, and emerging safely isn't simply a matter of getting a jab. We hear from three of those affected, plus Lily's resident psychologist.
International Women's Day: Q&A with Rupinder Bains
5 March 2021
This International Women's Day we talk to Rupinder Bains, a member of The Lily Foundation's Board of Directors, MD of the law firm Pinder Reaux & Associates, and the first ever Asian woman to serve on the Board of The Football Association (The FA).
Lily and partners fund £80k study into mito and neuropsychiatric diseases
25 February 2021
Lily is co-funding an £80,000 study into mitochondrial and neuropsychiatric diseases. The research aims to shed new light on the neurological impact of mitochondrial diseases, leading to improved information, mental health care and treatments for mito patients.
Coronation Street actor Jane Danson joins The Lily Foundation as Celebrity Patron
5 January 2021
The Lily Foundation is delighted to announce that Coronation Street actor Jane Danson has joined the charity as its latest celebrity patron.
A year of challenge, change and hope.
23 December 2020
An update on 2020 and a huge thank you from The Lily Foundation.
Research Focus: Vestibular Dysfunction
8 December 2020
Lily-funded researchers at the Centre for Neuromuscular Disease in London have developed a framework to identify causes of imbalance in mito patients. Here they talk about the challenges of working in the Covid pandemic, and how their research will make a difference to the lives of people with mito.
Times are tough, but we're still driving new research into mito
28 October 2020
In these uncertain times it's good to know that Lily is continuing to fund world-leading mito research. We're delighted to announce funding for three new projects.
Make your online shopping count this Christmas!
26 October 2020
We've partnered with Amazon Smile, Give as you Live and EasyFundraising, so you can raise funds for mito research with every online purchase – at no extra cost to you!
Yellow Day - Mito mum's book about grief sheds light on loss
7 October 2020
After losing her daughter to mitochondrial disease, children's writer and illustrator Hannah Chapman made a book to help others cope with grief. Here she talks about the creative process behind Yellow Day, and how it first took shape years before her own experience of bereavement.
Mito stories: Tirion
30 September 2020
Read the moving story of Tirion Ray, who died in 2018 after being diagnosed with mitochondrial disease, as told by her mother to The Bristol Post.
Mito community pulls out the stops for World Mitochondrial Disease Week
24 September 2020
The word on the street was 'mito' as people around the UK marked World Mitochondrial Disease Week 2020 with green lighting, fundraisers and more.
Corrie twins fundraise for The Lily Foundation
16 September 2020
The young twins who play Oliver Battersby, the boy diagnosed with mitochondrial disease in a heartbreaking Coronation Street storyline, have helped real life sufferers of the condition with a Corrie-themed fundraiser in support of The Lily Foundation.
Mito stories: Charlie
4 September 2020
Charlie Withers tragically died aged 2, after being diagnosed with mito at 18 months. Read her story as told to The Sun by her mother, Anna.
Mito on Coronation Street
3 September 2020
The Coronation Street storyline about Oliver Battersby, a boy with mitochondrial disease, is raising awareness about mito in a big way. We're aiming to maximise this exposure and remind people that the heartbreak unfolding on screen is being endured by hundreds of real families in the UK every day.
Mito stories: Rachael and Joseph
30 August 2020
Joanna Wells is mum to Rachael and Joseph, both diagnosed with mitochondrial disease. Read her story as told to Metro newspaper.
Ripples make waves! 9 reasons to keep raising awareness about mito
5 August 2020
With World Mitochondrial Disease Week (Sept 13-19) just around the corner, there's never been a better time to make a noise about mito – and it's not all about generating funds. Here are nine great reasons to raise awareness. We hope they help inspire you and others to get involved!
Lily granted lottery funds for Covid support
22 July 2020
The Lily Foundation has been granted National Lottery funding to help support people with mito through the Covid-19 crisis.
Emerging from lockdown – guidance for shielding patients and families
17 July 2020
After months of lockdown, transitioning to the 'new normal' is not easy. We've provided some guidance to help those who have been shielding manage the change.
Left in lockdown
6 July 2020
For parents of children like Coronation Street's Oliver Battersby, the end of lockdown is a long way off, writes the Lily Foundation's Liz Curtis
Happy birthday NHS!
3 July 2020
This month marks 72 years since the NHS was established. To mark the occasion, we're focusing on some of the ways The Lily Foundation works with the NHS to support people with mitochondrial diseases. It's a partnership we're immensely proud of, and one that brings real, lasting benefit to patients and their families.
Theo, 3, battles mito with pedal power in Lily fundraising challenge
24 June 2020
Theo Amani-Gibbs has mitochondrial disease, but has taken on a 20-mile walking / pedalling challenge for My Mito Miles, the virtual fundraising event organised by The Lily Foundation.
6 tips for running in hot weather
22 June 2020
With temperatures set to soar, here are 6 tips to help runners beat the heat
Charities put patients first with top 10 priorities for mito research
18 June 2020
Charities including The Lily Foundation have worked together with patients, carers and healthcare professionals to determine a 'top 10' list of the most important areas of mitochondrial research.
For people with mito, lockdown hasn't ended
1 June 2020
Lockdown restrictions might be easing, but people with mito are more vulnerable than ever in this crisis. Here's how you can help.
Mito awareness soars as Coronation Street storyline unfolds
21 May 2020
Awareness about mitochondrial disease has soared since Coronation Street began its heartbreaking storyline involving a child who develops the condition. The Lily Foundation saw visits to its website rocket by over 400% in May, when mitochondrial disease was first mentioned on the ITV soap, which is watched by millions.
10 simple acts of self-kindness for carers
20 May 2020
This week is Mental Health Awareness Week – a good time to recognise what a challenging time this is for people affected by mitochondrial diseases. These 10 simple acts of self-kindness will help get you through.
"I win!" 3-year-old Esther defies Leigh syndrome to take on 2.6 Challenge
18 May 2020
Three-year-old Esther Cowie, who has Leigh syndrome, raised over £3,000 by walking 26 laps of her garden after learning to walk independently for the first time just weeks earlier.
Coronation Street's Jane Danson raises awareness about mito on This Morning
11 May 2020
Coronation Street star Jane Danson touched the hearts of hundreds of UK families affected by mitochondrial diseases when she highlighted their cause on This Morning.
Coronation Street to make millions of viewers mito aware
7 May 2020
Mitochondrial disease will be in the national spotlight this summer as Coronation Street, one of the UK's most watched TV soap operas, features a storyline about a child with the condition. The storyline will run across multiple episodes of the popular ITV soap throughout the summer, in what is being seen as a momentous step in raising awareness about mitochondrial diseases and the impact they have on families.
Lily launches mental health service for young mito patients
4 May 2020
The Lily Foundation has launched a mental health service to support young people who are struggling with the psychological impact of living with a mitochondrial disease.
Research Focus: Leigh syndrome
12 March 2020
The Lily Foundation has teamed up with other mito charities around the globe to co-fund a promising new study into Leigh syndrome at the Wellcome Centre for Mitochondrial Research.
IMP updates list of medicines to be used with caution for mito patients
12 March 2020
An updated list of medicines to be used with caution by patients with primary mitochondrial diseases has recently been published by International Mito Patients.
"I get so much out of volunteering for Lily"
3 March 2020
Katie Curtis, Lily's auntie, has been supporting The Lily Foundation for 13 years. Here she talks about why she's still as motivated as ever, and how it feels to take a punch on the nose for a good cause.
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.
Research Focus: Yasmin Tang
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.
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.
Research Focus: Mitochondrial Gene Therapy
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.
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.
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.
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.
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 mitochondrial disease.
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?
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.