The Lily Foundation
@lilyfoundation.bsky.social
Fighting mito, finding hope
Our vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure.
https://www.thelilyfoundation.org.uk/
#mitochondrialdisease
Our vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure.
https://www.thelilyfoundation.org.uk/
#mitochondrialdisease
Every time you shop through Easyfundraising, your favourite retailers will donate to your chosen cause — and it won’t cost you a penny extra!
Shop through Easyfundraising this Black Friday to generate funds for The Lily Foundation⬇️
https://ow.ly/3pcG50XmrOR
Shop through Easyfundraising this Black Friday to generate funds for The Lily Foundation⬇️
https://ow.ly/3pcG50XmrOR
November 13, 2025 at 12:01 PM
Every time you shop through Easyfundraising, your favourite retailers will donate to your chosen cause — and it won’t cost you a penny extra!
Shop through Easyfundraising this Black Friday to generate funds for The Lily Foundation⬇️
https://ow.ly/3pcG50XmrOR
Shop through Easyfundraising this Black Friday to generate funds for The Lily Foundation⬇️
https://ow.ly/3pcG50XmrOR
Great day at the LifeArc Translational Centres Annual Showcase!👩🔬
Liz and Clare attended the event yesterday, hearing inspiring updates from all four Centres and connecting with professionals working in rare disease across the UK. 🧬
#TheLilyFoundation #LifeArc
Liz and Clare attended the event yesterday, hearing inspiring updates from all four Centres and connecting with professionals working in rare disease across the UK. 🧬
#TheLilyFoundation #LifeArc
November 12, 2025 at 12:05 PM
Great day at the LifeArc Translational Centres Annual Showcase!👩🔬
Liz and Clare attended the event yesterday, hearing inspiring updates from all four Centres and connecting with professionals working in rare disease across the UK. 🧬
#TheLilyFoundation #LifeArc
Liz and Clare attended the event yesterday, hearing inspiring updates from all four Centres and connecting with professionals working in rare disease across the UK. 🧬
#TheLilyFoundation #LifeArc
We’re delighted to announce that Lily Comedy Night will be returning to The Comedy Store on 2nd February 2026! 🎤
Buy your tickets now!
https://www.thelilyfoundation.org.uk/charity/get-involved/events/lily-comedy-night-2026-save-the-date/
Buy your tickets now!
https://www.thelilyfoundation.org.uk/charity/get-involved/events/lily-comedy-night-2026-save-the-date/
November 11, 2025 at 12:45 PM
We’re delighted to announce that Lily Comedy Night will be returning to The Comedy Store on 2nd February 2026! 🎤
Buy your tickets now!
https://www.thelilyfoundation.org.uk/charity/get-involved/events/lily-comedy-night-2026-save-the-date/
Buy your tickets now!
https://www.thelilyfoundation.org.uk/charity/get-involved/events/lily-comedy-night-2026-save-the-date/
Santa suits at the ready! 🎅
Santa in the City is back – and we want YOU to join The Lily Foundation for London’s most festive charity run! 🎁
Run, jog or walk – every step helps families affected by mitochondrial disease. 💜
https://ow.ly/cMcO50Xkekc
Santa in the City is back – and we want YOU to join The Lily Foundation for London’s most festive charity run! 🎁
Run, jog or walk – every step helps families affected by mitochondrial disease. 💜
https://ow.ly/cMcO50Xkekc
November 8, 2025 at 11:25 AM
Santa suits at the ready! 🎅
Santa in the City is back – and we want YOU to join The Lily Foundation for London’s most festive charity run! 🎁
Run, jog or walk – every step helps families affected by mitochondrial disease. 💜
https://ow.ly/cMcO50Xkekc
Santa in the City is back – and we want YOU to join The Lily Foundation for London’s most festive charity run! 🎁
Run, jog or walk – every step helps families affected by mitochondrial disease. 💜
https://ow.ly/cMcO50Xkekc
We’re delighted to announce that Lily Comedy Night will be returning to The Comedy Store on 2nd February 2026! 🎤
Buy your tickets now!
https://ow.ly/WOkQ50XlLsQ
Buy your tickets now!
https://ow.ly/WOkQ50XlLsQ
November 4, 2025 at 12:00 PM
We’re delighted to announce that Lily Comedy Night will be returning to The Comedy Store on 2nd February 2026! 🎤
Buy your tickets now!
https://ow.ly/WOkQ50XlLsQ
Buy your tickets now!
https://ow.ly/WOkQ50XlLsQ
Only 3 spaces left for Team Lily! Places for the London Landmarks Half Marathon are going FAST!🏃♀️Get yourself a spot before it's too late!
👉 We need YOU, sign up today and do something in aid of mitochondrial disease ⬇️
https://ow.ly/BBj050XbN6a
👉 We need YOU, sign up today and do something in aid of mitochondrial disease ⬇️
https://ow.ly/BBj050XbN6a
October 29, 2025 at 3:00 PM
Only 3 spaces left for Team Lily! Places for the London Landmarks Half Marathon are going FAST!🏃♀️Get yourself a spot before it's too late!
👉 We need YOU, sign up today and do something in aid of mitochondrial disease ⬇️
https://ow.ly/BBj050XbN6a
👉 We need YOU, sign up today and do something in aid of mitochondrial disease ⬇️
https://ow.ly/BBj050XbN6a
Join the fun, take on the Santa Run! 🎅
📍 Starting point: Paternoster Square, London
Sign up today and make this Christmas one to remember — it’s the most wonderful run of the year! ❤️
https://www.thelilyfoundation.org.uk/charity/get-involved/events/santa-in-the-city-london-2025/
📍 Starting point: Paternoster Square, London
Sign up today and make this Christmas one to remember — it’s the most wonderful run of the year! ❤️
https://www.thelilyfoundation.org.uk/charity/get-involved/events/santa-in-the-city-london-2025/
October 28, 2025 at 12:00 PM
Join the fun, take on the Santa Run! 🎅
📍 Starting point: Paternoster Square, London
Sign up today and make this Christmas one to remember — it’s the most wonderful run of the year! ❤️
https://www.thelilyfoundation.org.uk/charity/get-involved/events/santa-in-the-city-london-2025/
📍 Starting point: Paternoster Square, London
Sign up today and make this Christmas one to remember — it’s the most wonderful run of the year! ❤️
https://www.thelilyfoundation.org.uk/charity/get-involved/events/santa-in-the-city-london-2025/
Early bird tickets are here! 🎟️
📅 21 March 2026 | Park Plaza Riverbank, London
🎟️ Early bird price: £180 – available for a limited time!
Join us for glamour, live entertainment & a night that truly makes a difference. ❤️
https://ow.ly/NZ7N50X90XP
📅 21 March 2026 | Park Plaza Riverbank, London
🎟️ Early bird price: £180 – available for a limited time!
Join us for glamour, live entertainment & a night that truly makes a difference. ❤️
https://ow.ly/NZ7N50X90XP
October 14, 2025 at 1:35 PM
Early bird tickets are here! 🎟️
📅 21 March 2026 | Park Plaza Riverbank, London
🎟️ Early bird price: £180 – available for a limited time!
Join us for glamour, live entertainment & a night that truly makes a difference. ❤️
https://ow.ly/NZ7N50X90XP
📅 21 March 2026 | Park Plaza Riverbank, London
🎟️ Early bird price: £180 – available for a limited time!
Join us for glamour, live entertainment & a night that truly makes a difference. ❤️
https://ow.ly/NZ7N50X90XP
This week marks Baby Loss Awareness Week ✨
On Wednesday, people across the world will join together in the Wave of Light—lighting a candle at 7pm to remember the babies who are no longer with us. 🕯️
We warmly invite members of our community to take part if they wish 🩷
On Wednesday, people across the world will join together in the Wave of Light—lighting a candle at 7pm to remember the babies who are no longer with us. 🕯️
We warmly invite members of our community to take part if they wish 🩷
October 13, 2025 at 2:05 PM
This week marks Baby Loss Awareness Week ✨
On Wednesday, people across the world will join together in the Wave of Light—lighting a candle at 7pm to remember the babies who are no longer with us. 🕯️
We warmly invite members of our community to take part if they wish 🩷
On Wednesday, people across the world will join together in the Wave of Light—lighting a candle at 7pm to remember the babies who are no longer with us. 🕯️
We warmly invite members of our community to take part if they wish 🩷
👁️Today is World Sight Day – and we’re proud to reshare some incredible news for the mito community. Idebenone is now available for patients with LHON – a breakthrough that could help preserve vision and improve lives.
📖 Read Mary’s story to learn more: https://ow.ly/MZhL50X3wtH
📖 Read Mary’s story to learn more: https://ow.ly/MZhL50X3wtH
October 9, 2025 at 12:05 PM
👁️Today is World Sight Day – and we’re proud to reshare some incredible news for the mito community. Idebenone is now available for patients with LHON – a breakthrough that could help preserve vision and improve lives.
📖 Read Mary’s story to learn more: https://ow.ly/MZhL50X3wtH
📖 Read Mary’s story to learn more: https://ow.ly/MZhL50X3wtH
🔬 Supporting medical research into mitochondrial disease is at the heart of our mission.
Explore our past and current research projects - https://www.thelilyfoundation.org.uk/affected-by-mito/our-research/lily-funded-research-projects/
Together, we’re driving hope through science. 💚
Explore our past and current research projects - https://www.thelilyfoundation.org.uk/affected-by-mito/our-research/lily-funded-research-projects/
Together, we’re driving hope through science. 💚
October 6, 2025 at 11:00 AM
🔬 Supporting medical research into mitochondrial disease is at the heart of our mission.
Explore our past and current research projects - https://www.thelilyfoundation.org.uk/affected-by-mito/our-research/lily-funded-research-projects/
Together, we’re driving hope through science. 💚
Explore our past and current research projects - https://www.thelilyfoundation.org.uk/affected-by-mito/our-research/lily-funded-research-projects/
Together, we’re driving hope through science. 💚
Raising awareness of #mito isn't easy – it’s a complex disease that can be hard to explain 🤔
To help put mito on the map during World Mitochondrial Disease Week, our Research Manager @abioblog.bsky.social is here to explain the disease in a really simple way
Watch, learn and share! 💚
#mitoaware
To help put mito on the map during World Mitochondrial Disease Week, our Research Manager @abioblog.bsky.social is here to explain the disease in a really simple way
Watch, learn and share! 💚
#mitoaware
September 19, 2025 at 3:06 PM
Raising awareness of #mito isn't easy – it’s a complex disease that can be hard to explain 🤔
To help put mito on the map during World Mitochondrial Disease Week, our Research Manager @abioblog.bsky.social is here to explain the disease in a really simple way
Watch, learn and share! 💚
#mitoaware
To help put mito on the map during World Mitochondrial Disease Week, our Research Manager @abioblog.bsky.social is here to explain the disease in a really simple way
Watch, learn and share! 💚
#mitoaware
It’s here – World Mitochondrial Disease Week! 💚
We’re proud to collaborate with other mito charities across the UK to put mito on the map – let's spread the word together!
👉 See how you can get involved:
🔗 thelilyfoundation.org.uk/charity/get-involved/world-mitochondrial-disease-week
We’re proud to collaborate with other mito charities across the UK to put mito on the map – let's spread the word together!
👉 See how you can get involved:
🔗 thelilyfoundation.org.uk/charity/get-involved/world-mitochondrial-disease-week
September 15, 2025 at 2:21 PM
It’s here – World Mitochondrial Disease Week! 💚
We’re proud to collaborate with other mito charities across the UK to put mito on the map – let's spread the word together!
👉 See how you can get involved:
🔗 thelilyfoundation.org.uk/charity/get-involved/world-mitochondrial-disease-week
We’re proud to collaborate with other mito charities across the UK to put mito on the map – let's spread the word together!
👉 See how you can get involved:
🔗 thelilyfoundation.org.uk/charity/get-involved/world-mitochondrial-disease-week
We’re changing our twibbons ahead of World Mitochondrial Disease Week to raise awareness of mitochondrial disease 💚
Please change your twibbon today too! ⬇️
www.twibbonize.com/wmdw2025
#mitoaware
Please change your twibbon today too! ⬇️
www.twibbonize.com/wmdw2025
#mitoaware
August 19, 2025 at 9:49 AM
We’re changing our twibbons ahead of World Mitochondrial Disease Week to raise awareness of mitochondrial disease 💚
Please change your twibbon today too! ⬇️
www.twibbonize.com/wmdw2025
#mitoaware
Please change your twibbon today too! ⬇️
www.twibbonize.com/wmdw2025
#mitoaware
Reposted by The Lily Foundation
👉 'A huge win for the mito community' First ever treatment for a mitochondrial condition that causes sudden vision loss has been approved for use on the NHS in England!
👉 bit.ly/4oHO8m3
@cuh.nhs.uk @mitocamb.bsky.social @cam.ac.uk @moorfieldsbrc.bsky.social @lilyfoundation.bsky.social
👉 bit.ly/4oHO8m3
@cuh.nhs.uk @mitocamb.bsky.social @cam.ac.uk @moorfieldsbrc.bsky.social @lilyfoundation.bsky.social
First ever mitochondrial disease treatment approved by NHS England - NIHR Cambridge Biomedical Research Centre
The first ever treatment for a mitochondrial condition has been approved for use on the NHS in England in a major breakthrough in the fight against the disease.
bit.ly
August 7, 2025 at 11:56 AM
👉 'A huge win for the mito community' First ever treatment for a mitochondrial condition that causes sudden vision loss has been approved for use on the NHS in England!
👉 bit.ly/4oHO8m3
@cuh.nhs.uk @mitocamb.bsky.social @cam.ac.uk @moorfieldsbrc.bsky.social @lilyfoundation.bsky.social
👉 bit.ly/4oHO8m3
@cuh.nhs.uk @mitocamb.bsky.social @cam.ac.uk @moorfieldsbrc.bsky.social @lilyfoundation.bsky.social
Reposted by The Lily Foundation
NHS England approves Idebenone (Raxone) to treat Leber’s Hereditary Optic Neuropathy, a rare genetic disease that can lead to sudden vision loss.
🔗 buff.ly/o45O7bu
#NIHRsupported #RareDisease #LHON
@ucleye.bsky.social @moorfields.bsky.social @lilyfoundation.bsky.social @cambridgebrc.bsky.social
🔗 buff.ly/o45O7bu
#NIHRsupported #RareDisease #LHON
@ucleye.bsky.social @moorfields.bsky.social @lilyfoundation.bsky.social @cambridgebrc.bsky.social
August 7, 2025 at 1:09 PM
NHS England approves Idebenone (Raxone) to treat Leber’s Hereditary Optic Neuropathy, a rare genetic disease that can lead to sudden vision loss.
🔗 buff.ly/o45O7bu
#NIHRsupported #RareDisease #LHON
@ucleye.bsky.social @moorfields.bsky.social @lilyfoundation.bsky.social @cambridgebrc.bsky.social
🔗 buff.ly/o45O7bu
#NIHRsupported #RareDisease #LHON
@ucleye.bsky.social @moorfields.bsky.social @lilyfoundation.bsky.social @cambridgebrc.bsky.social
📢 BREAKING NEWS!
The first ever treatment for a mitochondrial disease has been approved for use by NHS England! Idebenone is now available for LHON patients
A huge milestone for the mito community! 💥
www.thelilyfoundation.org.uk/news/first-e...
@mitocamb.bsky.social
The first ever treatment for a mitochondrial disease has been approved for use by NHS England! Idebenone is now available for LHON patients
A huge milestone for the mito community! 💥
www.thelilyfoundation.org.uk/news/first-e...
@mitocamb.bsky.social
August 7, 2025 at 11:28 AM
📢 BREAKING NEWS!
The first ever treatment for a mitochondrial disease has been approved for use by NHS England! Idebenone is now available for LHON patients
A huge milestone for the mito community! 💥
www.thelilyfoundation.org.uk/news/first-e...
@mitocamb.bsky.social
The first ever treatment for a mitochondrial disease has been approved for use by NHS England! Idebenone is now available for LHON patients
A huge milestone for the mito community! 💥
www.thelilyfoundation.org.uk/news/first-e...
@mitocamb.bsky.social
Zebrafish are helping scientists tackle rare #mitochondrialdiseases like MDDS
In 2018/19, Lily funded research using zebrafish to test treatments
Find out what happened in our latest Research Zone post with Research Manager Maria and Dr Ben Munro
www.thelilyfoundation.org.uk/affected-by-...
In 2018/19, Lily funded research using zebrafish to test treatments
Find out what happened in our latest Research Zone post with Research Manager Maria and Dr Ben Munro
www.thelilyfoundation.org.uk/affected-by-...
July 31, 2025 at 10:13 AM
Zebrafish are helping scientists tackle rare #mitochondrialdiseases like MDDS
In 2018/19, Lily funded research using zebrafish to test treatments
Find out what happened in our latest Research Zone post with Research Manager Maria and Dr Ben Munro
www.thelilyfoundation.org.uk/affected-by-...
In 2018/19, Lily funded research using zebrafish to test treatments
Find out what happened in our latest Research Zone post with Research Manager Maria and Dr Ben Munro
www.thelilyfoundation.org.uk/affected-by-...
We’ve been hearing a lot about #mitochondrialdonation today – but what exactly is it?
It’s a groundbreaking fertility technique that helps women with faulty mitochondrial DNA have healthy babies
Want to understand more? Watch our explainer video 👇
www.thelilyfoundation.org.uk/affected-by-...
It’s a groundbreaking fertility technique that helps women with faulty mitochondrial DNA have healthy babies
Want to understand more? Watch our explainer video 👇
www.thelilyfoundation.org.uk/affected-by-...
July 17, 2025 at 11:21 AM
We’ve been hearing a lot about #mitochondrialdonation today – but what exactly is it?
It’s a groundbreaking fertility technique that helps women with faulty mitochondrial DNA have healthy babies
Want to understand more? Watch our explainer video 👇
www.thelilyfoundation.org.uk/affected-by-...
It’s a groundbreaking fertility technique that helps women with faulty mitochondrial DNA have healthy babies
Want to understand more? Watch our explainer video 👇
www.thelilyfoundation.org.uk/affected-by-...
10 years ago, The Lily Foundation stood at the heart of the campaign to legalise #mitochondrialdonation.
Today, research confirms it’s working, giving families the chance to have healthy, genetically related children 💗
Read more and please share!
www.thelilyfoundation.org.uk/news/breakth...
Today, research confirms it’s working, giving families the chance to have healthy, genetically related children 💗
Read more and please share!
www.thelilyfoundation.org.uk/news/breakth...
July 16, 2025 at 9:31 PM
10 years ago, The Lily Foundation stood at the heart of the campaign to legalise #mitochondrialdonation.
Today, research confirms it’s working, giving families the chance to have healthy, genetically related children 💗
Read more and please share!
www.thelilyfoundation.org.uk/news/breakth...
Today, research confirms it’s working, giving families the chance to have healthy, genetically related children 💗
Read more and please share!
www.thelilyfoundation.org.uk/news/breakth...
Are you a healthcare professional working with a #TK2d patient?
Or are you or a loved one affected by this rare form of #mitochondrialdisease?
Please help shape access to a potential new #treatment by sharing or completing our short survey by 17th Aug.
freeonlinesurveys.com/s/BP8zdKCm
Thank you
Or are you or a loved one affected by this rare form of #mitochondrialdisease?
Please help shape access to a potential new #treatment by sharing or completing our short survey by 17th Aug.
freeonlinesurveys.com/s/BP8zdKCm
Thank you
Thymidine Kinase 2 Deficiency (TK2d) Experience Survey
freeonlinesurveys.com
July 8, 2025 at 10:41 AM
Are you a healthcare professional working with a #TK2d patient?
Or are you or a loved one affected by this rare form of #mitochondrialdisease?
Please help shape access to a potential new #treatment by sharing or completing our short survey by 17th Aug.
freeonlinesurveys.com/s/BP8zdKCm
Thank you
Or are you or a loved one affected by this rare form of #mitochondrialdisease?
Please help shape access to a potential new #treatment by sharing or completing our short survey by 17th Aug.
freeonlinesurveys.com/s/BP8zdKCm
Thank you
Reposted by The Lily Foundation
The recent report published by @lifearc.bsky.social and @geneticallianceuk.bsky.social gives several recommendations on how we can #ChangeTheRareFuture and get treatments to people with rare conditions faster.
Read it here: t.ly/Ka7qn.
@lilyfoundation.bsky.social
Read it here: t.ly/Ka7qn.
@lilyfoundation.bsky.social
July 7, 2025 at 4:23 PM
The recent report published by @lifearc.bsky.social and @geneticallianceuk.bsky.social gives several recommendations on how we can #ChangeTheRareFuture and get treatments to people with rare conditions faster.
Read it here: t.ly/Ka7qn.
@lilyfoundation.bsky.social
Read it here: t.ly/Ka7qn.
@lilyfoundation.bsky.social
Discover in our Research Zone why biomarkers are essential for tracking #mito progression and how the @lifearc.bsky.social Centre for Rare Mitochondrial Diseases is supporting research to develop non-invasive, organ-specific tools for better care.
www.thelilyfoundation.org.uk/affected-by-...
www.thelilyfoundation.org.uk/affected-by-...
July 4, 2025 at 1:46 PM
Discover in our Research Zone why biomarkers are essential for tracking #mito progression and how the @lifearc.bsky.social Centre for Rare Mitochondrial Diseases is supporting research to develop non-invasive, organ-specific tools for better care.
www.thelilyfoundation.org.uk/affected-by-...
www.thelilyfoundation.org.uk/affected-by-...
We’re proud to share the impact of Lily-funded research into vestibular dysfunction – a little-known but life-altering symptom affecting people with mito
A newly developed framework is helping doctors support patients with balance issues – find out more
www.thelilyfoundation.org.uk/affected-by-...
A newly developed framework is helping doctors support patients with balance issues – find out more
www.thelilyfoundation.org.uk/affected-by-...
June 18, 2025 at 9:36 AM
We’re proud to share the impact of Lily-funded research into vestibular dysfunction – a little-known but life-altering symptom affecting people with mito
A newly developed framework is helping doctors support patients with balance issues – find out more
www.thelilyfoundation.org.uk/affected-by-...
A newly developed framework is helping doctors support patients with balance issues – find out more
www.thelilyfoundation.org.uk/affected-by-...
Thank you to everyone who took a swing at mito in last week’s Lily South West Golf Day at Cumberwell Park. We’re delighted to announce that your efforts raised a whopping £16,000!
What’s more, we delighted to confirm we’ll be doing it all again next year, on Friday 29th May, so save the date!
What’s more, we delighted to confirm we’ll be doing it all again next year, on Friday 29th May, so save the date!
June 5, 2025 at 8:21 AM
Thank you to everyone who took a swing at mito in last week’s Lily South West Golf Day at Cumberwell Park. We’re delighted to announce that your efforts raised a whopping £16,000!
What’s more, we delighted to confirm we’ll be doing it all again next year, on Friday 29th May, so save the date!
What’s more, we delighted to confirm we’ll be doing it all again next year, on Friday 29th May, so save the date!