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!


Prof Joanna Poulton

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 Foundation Charity Ball

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.


Claire Tranter with her daughter Georgia

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.


Mito stories: Silothabo Dliso

27 July 2021

After losing two daughters to mitochondrial disease, training in medicine helped me to make sense of this terrible condition, writes Silothabo Dliso, Physician Associate at Alder Hey Children's Hospital.


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.


Harry Thorogood, 12, is diagnosed with Leigh syndrome, a form of mitochondrial disease

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, CEO of The Lily Foundation

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.


Dr Alessandro Colasanti

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.


10 facts about dystonia and mitochondrial disease

5 May 2021

To mark Dystonia Awareness Week (May 3rd - 11th) we are sharing 10 facts about the disorder and its link to mitochondrial conditions.


Dr Albert Lim, The Wellcome Centre for Mitochondrial Research

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.


Rupinder Bains

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).


Mitochondrial Disease research, The Lily Foundation

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

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.


Lily 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!


Hannah Chapman with her book Yellow Day and photo of her daughter Maisie who died of mitochondrial disease

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.


Tirion Ray

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

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.  


Oliver Battersby Coronation Street twins raise funds for The Lily Foundation

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.


Anna and Steve Withers with their daughter Charlie, who died of mitochondrial disease aged 2

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.


Coronation Street Mitochondrial Disease

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.


Liz Curtis, CEO of The Lily Foundation

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 is 3 and has mitochondrial disease but he's fundraising on his trike

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


Lily Foundation research into mitochondrial disease

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.


Esther Cowie has Leigh syndrome, a type of mitochondrial disease

"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 Mitochondrial Disease

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

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 Foundation Mental Health Service

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. 


Albert Lim, Leigh syndrome research

Lily 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

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.


Isabelle Gregory, 8, who has mitochondrial disease, and her brother Issac, 10, who helps care for her

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.


Mitochondrial Disease research lab

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.


The Lily Foundation Comedy Night at The Comedy Store

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 Carter is fundraising for The Lily Foundation

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 Foundation funds research into mitochondrial disease

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. 


Jason Shaw

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

Couch to 5k running tips

8 January 2020

Personal training Jenny Dixon shares her couch-to-5k running tips for beginner runners.


Yasmin Tang, Lily Foundation researcher

Lily Research Focus

7 December 2019

Researcher Yasmin Tang talks about her Lily-funded investigation into the causes of mitochondrial disease.


Lily Foundation Young Adult Weekend, Calvert Trust, Lake District

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.


Dean Curtis of The Lily Foundation

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.


Sophie Carr with her baby daughter Freya Rose

'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.


Hannah Chapman with her baby daughter Maisie who died from mitochondrial disease at six-months old

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.


Dr Michal Minczuk Lily Foundation Mitochondrial Research Gene Therapy

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

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.


Mitochondrial Disease Patient Engagement Day

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.


microscope medical research

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.


Euromit 2020

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.


Families raise awareness during global mitochondrial disease awareness week

'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.


Leigh Syndrome International Consortium research

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. 


Lily Foundation Disability & Employment Benefits Advice

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.


Lily Foundation Family Weekend, mitochondrial disease charity

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.


Alan Davies with Sally Philips, Ranj Singh and host Ben Shephard on Tipping Point: Lucky Stars

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.


The Lily Foundation charity family affected by  mitochondrial disease

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


Staff from the Lily Foundation and Wellcome Trust Centre for Mitochondrial Research

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.


The Lily Foundation fundraising walk 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.


Dr Cecilia Jimenez-Moreno, Wellcome Centre for Mitochondrial Research

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.


Dr Alejandro Dorenbaum of Reneo Pharmaceuticals

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

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.


Lily Foundation staff Dr Lyndsey Butterworth and Liz Curtis at a mitochondrial disease Patient Information Day

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.


Mitochondrial Disease research lab DNA samples

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.


Shane Bell, PHD researcher at the Wellcome Centre for Mitochondrial Research, Newcastle University

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.


Disabled-friendly holiday advice from The Lily Foundation

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.


Lucy Watts MBE

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


The Lily Foundation, fighting mitochondrial disease

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.


Vitality London 10k

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.


Ride London charity fundraising The Lily Foundation

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.


Sophie Carr, who has mitochondrial disease, and husband Jamie on their wedding day

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

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 approved for clinical trials in UK

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 the 2019 British Paediatric Neurology Association conference in Liverpool

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.


Skydiving with The Lily Foundation

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.


Young carer Chris Haywood and his brother Tim, who has mitochondrial disease.

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.


Tips to improve your running posture

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 Foundation mitochondrial disease research

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 patient information day for adults with mitochondrial disease

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


Flight Club Darts, The Lily Foundation Charity Event

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!


Alan Davies Lily Comedy Night Charity Event

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.


Stuart Connor with his daughter Grace, who  tragically died from mitochondrial disease at the age of 3

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.


Mitochondrial Disease Research MNGIE The Lily Foundation

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.


Running The London Marathon for The Lily Foundation, fighting mitochondrial disease

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.


Journal of Inherited Metabolic 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.


Mitochondrial Disease The Lily Foundation Charity Fundraising

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.


Lily Foundation fundraiser Neil Harper with his friend James, 8, who has mitochondrial disease

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 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?


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.