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
🎤 Comedian Confirmed!
We’re thrilled to announce the fabulous Marcus Brigstocke!
Stay tuned… more comedians will be announced soon!👀
Buy your tickets now!
https://ow.ly/UpuU50XlLre
We’re thrilled to announce the fabulous Marcus Brigstocke!
Stay tuned… more comedians will be announced soon!👀
Buy your tickets now!
https://ow.ly/UpuU50XlLre
November 26, 2025 at 1:01 PM
🎤 Comedian Confirmed!
We’re thrilled to announce the fabulous Marcus Brigstocke!
Stay tuned… more comedians will be announced soon!👀
Buy your tickets now!
https://ow.ly/UpuU50XlLre
We’re thrilled to announce the fabulous Marcus Brigstocke!
Stay tuned… more comedians will be announced soon!👀
Buy your tickets now!
https://ow.ly/UpuU50XlLre
RAFFLE CLOSES TODAY AT 12PM, LAST CHANCE!!
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!🔥👀
Texts to short codes cost one standard network rate message each plus any donation amount you may choose to give
✨ Closes 12pm, Monday 24th November
Find out more - https://ow.ly/mLwK50XpR0g
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!🔥👀
Texts to short codes cost one standard network rate message each plus any donation amount you may choose to give
✨ Closes 12pm, Monday 24th November
Find out more - https://ow.ly/mLwK50XpR0g
November 24, 2025 at 8:00 AM
RAFFLE CLOSES TODAY AT 12PM, LAST CHANCE!!
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!🔥👀
Texts to short codes cost one standard network rate message each plus any donation amount you may choose to give
✨ Closes 12pm, Monday 24th November
Find out more - https://ow.ly/mLwK50XpR0g
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!🔥👀
Texts to short codes cost one standard network rate message each plus any donation amount you may choose to give
✨ Closes 12pm, Monday 24th November
Find out more - https://ow.ly/mLwK50XpR0g
TWO DAYS TO GO!!
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!🔥👀
Texts to short codes cost one standard network rate message each plus any donation amount you may choose to give
✨ Closes 12pm, Monday 24th November
To find out more click here - https://ow.ly/rNtB50XpR0E
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!🔥👀
Texts to short codes cost one standard network rate message each plus any donation amount you may choose to give
✨ Closes 12pm, Monday 24th November
To find out more click here - https://ow.ly/rNtB50XpR0E
November 22, 2025 at 4:45 PM
TWO DAYS TO GO!!
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!🔥👀
Texts to short codes cost one standard network rate message each plus any donation amount you may choose to give
✨ Closes 12pm, Monday 24th November
To find out more click here - https://ow.ly/rNtB50XpR0E
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!🔥👀
Texts to short codes cost one standard network rate message each plus any donation amount you may choose to give
✨ Closes 12pm, Monday 24th November
To find out more click here - https://ow.ly/rNtB50XpR0E
Our Fabulous Christmas Text Raffle is NOW LIVE!!!
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!⭐
Texts to shortcodes cost one standard network rate message each plus any donation amount you may choose to give
To find out more click here - https://ow.ly/i4J650XokTz
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!⭐
Texts to shortcodes cost one standard network rate message each plus any donation amount you may choose to give
To find out more click here - https://ow.ly/i4J650XokTz
November 21, 2025 at 6:01 PM
Our Fabulous Christmas Text Raffle is NOW LIVE!!!
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!⭐
Texts to shortcodes cost one standard network rate message each plus any donation amount you may choose to give
To find out more click here - https://ow.ly/i4J650XokTz
Text "LILYCHRISTMAS" to 70215 for a chance to WIN!⭐
Texts to shortcodes cost one standard network rate message each plus any donation amount you may choose to give
To find out more click here - https://ow.ly/i4J650XokTz
Join us for Goldsmiths Choral Union annual Christmas celebration — a festive evening of modern and traditional music, plus carols for everyone to sing along to! 🎄🎅
Come and celebrate the season with us! https://www.goldsmithschoralunion.org/events-calendar/christmas24-fcads
Come and celebrate the season with us! https://www.goldsmithschoralunion.org/events-calendar/christmas24-fcads
November 21, 2025 at 12:05 PM
Join us for Goldsmiths Choral Union annual Christmas celebration — a festive evening of modern and traditional music, plus carols for everyone to sing along to! 🎄🎅
Come and celebrate the season with us! https://www.goldsmithschoralunion.org/events-calendar/christmas24-fcads
Come and celebrate the season with us! https://www.goldsmithschoralunion.org/events-calendar/christmas24-fcads
A simple hello can make someone’s day, start a conversation, or even spark a new friendship. So, we’re inviting all of you to join in!
Once you’ve shared your hello, take a moment to reply to someone else’s comment, you never know who you might connect with!
Once you’ve shared your hello, take a moment to reply to someone else’s comment, you never know who you might connect with!
November 21, 2025 at 12:00 PM
A simple hello can make someone’s day, start a conversation, or even spark a new friendship. So, we’re inviting all of you to join in!
Once you’ve shared your hello, take a moment to reply to someone else’s comment, you never know who you might connect with!
Once you’ve shared your hello, take a moment to reply to someone else’s comment, you never know who you might connect with!
Get your Early Bird tickets today! 🎟️
Step into a world of feathers, flair & fundraising at The Lily Foundation’s dazzling Burlesque Ball, proudly sponsored by ICB Group.
To find out more visit our website or click the link in our bio.
https://ow.ly/ai8t50XplpQ
Step into a world of feathers, flair & fundraising at The Lily Foundation’s dazzling Burlesque Ball, proudly sponsored by ICB Group.
To find out more visit our website or click the link in our bio.
https://ow.ly/ai8t50XplpQ
November 20, 2025 at 2:15 PM
Get your Early Bird tickets today! 🎟️
Step into a world of feathers, flair & fundraising at The Lily Foundation’s dazzling Burlesque Ball, proudly sponsored by ICB Group.
To find out more visit our website or click the link in our bio.
https://ow.ly/ai8t50XplpQ
Step into a world of feathers, flair & fundraising at The Lily Foundation’s dazzling Burlesque Ball, proudly sponsored by ICB Group.
To find out more visit our website or click the link in our bio.
https://ow.ly/ai8t50XplpQ
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/ovmh50XpiVA
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/ovmh50XpiVA
November 18, 2025 at 3:30 PM
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/ovmh50XpiVA
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/ovmh50XpiVA
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