Lightnews — Scholar-powered news

The Lily Foundation @lilyfoundation.bsky.social · 6h

👁️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

The Lily Foundation @lilyfoundation.bsky.social · 3d

🔬 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. 💚

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The Lily Foundation @lilyfoundation.bsky.social · 20d

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

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The Lily Foundation @lilyfoundation.bsky.social · 24d

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

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The Lily Foundation @lilyfoundation.bsky.social · Aug 19

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

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Reposted by The Lily Foundation

NIHR Cambridge Biomedical Research Centre @cambridgebrc.bsky.social · Aug 7

👉 '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

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

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Reposted by The Lily Foundation

moorfieldsbrc.bsky.social @moorfieldsbrc.bsky.social · Aug 7

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

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The Lily Foundation @lilyfoundation.bsky.social · Aug 7

📢 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

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The Lily Foundation @lilyfoundation.bsky.social · Jul 31

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-...

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The Lily Foundation @lilyfoundation.bsky.social · Jul 17

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-...

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The Lily Foundation @lilyfoundation.bsky.social · Jul 16

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...

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The Lily Foundation @lilyfoundation.bsky.social · Jul 8

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

Thymidine Kinase 2 Deficiency (TK2d) Experience Survey

freeonlinesurveys.com

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Reposted by The Lily Foundation

Cambridge Clinical Mitochondrial Research Group @mitocamb.bsky.social · Jul 7

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

Orange fading to pink background. Lots of figures greyed out with three (rare) figures much bolder. Text says: there is an opportunity to change the future for millions of people living with rare conditions in the UK

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The Lily Foundation @lilyfoundation.bsky.social · Jul 4

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-...

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The Lily Foundation @lilyfoundation.bsky.social · Jun 18

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-...

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The Lily Foundation @lilyfoundation.bsky.social · Jun 5

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!

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The Lily Foundation @lilyfoundation.bsky.social · May 22

Meet the minds behind the LifeArc Centre for Rare Mitochondrial Diseases

Hear the excitement from the project leads as they hope to transform the mitochondrial research landscape, and meet mito patient Harry, who reminds us why this work matters

www.thelilyfoundation.org.uk/affected-by-...

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The Lily Foundation @lilyfoundation.bsky.social · May 14

We’re proud that the @lifearc.bsky.social Centre for Rare Mitochondrial Diseases has officially launched at a prestigious House of Lords event – a significant milestone in transforming the UK’s rare disease research landscape

Stay tuned to meet the lead minds behind the centre on our Research Zone!

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The Lily Foundation @lilyfoundation.bsky.social · May 9

If you work with anyone who's received a genetic diagnosis of mito – or has lost someone to the condition – we need them to fill out our national survey, closing on Tuesday

Here’s our CEO and founder, Liz, to explain why every voice matters

Please share:
mpscom.eu.qualtrics.com/jfe/form/SV_...

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The Lily Foundation @lilyfoundation.bsky.social · Apr 29

💚 A MASSIVE THANK YOU 💚

To every incredible runner who took on the #LondonMarathon 🏃‍♂️

We've raised almost £125,000 to continue the fight against #mitochondrialdisease 🦋

Your dedication, courage and effort mean the world to us and we’re proud to have you on #TeamLily 💪

#LilyFoundation

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The Lily Foundation @lilyfoundation.bsky.social · Apr 22

The Big Lily Bid is now live!!

This is your chance to own one-of-a-kind treasures generously donated by some of our amazing celebrity friends, and support The Lily Foundation’s work

Bid now - our exclusive online auction closes at 9pm on Wednesday 30th April!
astarauction.com/TheBigLilyBi...

The Lily Foundation @lilyfoundation.bsky.social · Apr 17

We’ve launched a national survey with UCL & RDRP to learn more about how people receive a genetic diagnosis of #mitochondrialdisease

It can be a long, complex process & we want to improve it

Please share with your patients & networks 👉https://mpscom.eu.qualtrics.com/jfe/form/SV_6tgcIBuDfAcGhRI

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The Lily Foundation @lilyfoundation.bsky.social · Apr 15

Yesterday we were proud to join the launch of the LifeArc Centre for Rare Mitochondrial Diseases - a major step forward in mito research

We led a workshop on making complex science clear – because involving patients is key to success

#mitochondrialdisease #mitoresearch #patientvoice #raredisease

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The Lily Foundation @lilyfoundation.bsky.social · Mar 7

Today marks the start of #BritishScienceWeek

We asked @ritahorvath.bsky.social what first drew her to science and how, as a project lead at the new LifeArc Centre for Rare Mitochondrial Diseases, she’s advancing the search for new treatments and a cure

www.thelilyfoundation.org.uk/news/smashin...

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The Lily Foundation @lilyfoundation.bsky.social · Mar 5

Calling all rugby fans!

Join us for a memorable night in Bath as Lions Legends Matt Perry, Lee Mears, Jeremy Guscott & Nigel Redman share their sporting memories

All proceeds split between Sporting Family Change and The Lily Foundation

Get your ticket
www.thelilyfoundation.org.uk/charity/get-...

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