World Mitochondrial Disease Awarness Week 2026 Round Up

What an incredible week we’ve all had in the mito community, powering awareness for mitochondrial disease and connecting with others impacted across the UK.

Just some of what we had going on at My Mito Mission included Glow Walks, attending Patient Information Days at Newcastle and Oxford, lighting up over 30 buildings in green, providing free Light Up For Mito candle holders and glow sticks, Facebook frames, and of course lots of mission activity! All incredible to see and so powerful

World Mito Week Round Up 2026

What an incredible week we’ve all had in the mito community, powering awareness for mitochondrial disease and connecting with others impacted across the UK.

Just some of what we had going on at My Mito Mission included Glow Walks, attending Patient Information Days at Newcastle and Oxford, lighting up over 30 buildings in green, providing free Light Up For Mito candle holders and glow sticks, Facebook frames, and of course lots of mission activity! All incredible to see and so powerful.

Facebook frame Singh Family
Light Up For Mito Facebook Frame - The Singh Family
Glow walk Christine
Christine's Mito Mission on a Glow Walk
Candle Paul MM
Paul lit his Light Up For Mito candle
Glow walk Emma & Eddie
Eddie & Emma's Mito Mission at end of Glow Walk
Light up Lillia
Meadowhall Shopping Centre lit up for Lillia's Mission
Hull light up Ezra
Hull City Hall lit up for Ezra's Mission
Huddersfield Uni Eddie MM
Huddersfield University lit up for Eddie's Mission
Merry Hill lit up regan
Merry Hill Shopping Centre lit up for Regan's Mission
Oxford Patient Day SJMM
Christine & Steph at Oxford Patient Information Day
Newcastle Patient Day Eddie
Ash & Eddie at Newcastle Patient Information Day

Free Light Up For Mito Tealight Holders!

To help raise awareness this World Mito Week, we have a limited number of our Light Up for Mito tealight holders and tealights available to give away for free to anybody who wants to help us raise awareness of mitochondrial disease!

We hope these little lights will help start conversations about an illness that is still far too often misunderstood, overlooked or unheard of.

Whether you live with mitochondrial disease, support someone who does, or simply want to help us spread the word, we’d love for you to apply.

As quantities are limited, completing the form does not guarantee that you will receive one. We’ll contact successful applicants. Please only apply for one per household. UK only.

Free Light Up For Mito Tealight Holders!

Free candle holder

To help raise awareness this World Mito Week, we have a limited number of our Light Up for Mito tealight holders and tealights available to give away for free to anybody who wants to help us raise awareness of mitochondrial disease!

We hope these little lights will help start conversations about an illness that is still far too often misunderstood, overlooked or unheard of.

Whether you live with mitochondrial disease, support someone who does, or simply want to help us spread the word, we’d love for you to apply.

As quantities are limited, completing the form does not guarantee that you will receive one. We’ll contact successful applicants. Please only apply for one per household. UK only.

 

World Mitochondrial Disease Week and Light Up For Mito

World Mito Week is approaching, a global event which raises awareness of mitochondrial disease among doctors and the general public, and aims to improve the lives of people affected by mito.

It is an initiative of International Mito Patients (IMP) which unites mito patient organisations around the world to lead a global mito movement, and we get involved every year by asking buildings across the UK to light up in green to raise awareness, joining the campaign on social media, and organising our Glow Walks (more details above!)

Light Up For Mito (LUFM) is an awareness campaign which takes place on the Saturday of World Mito Week (19th September this year!). Each September, many monuments, landmarks and buildings light up green to raise awareness, and My Mito Mission take part in the campaign each year by encouraging buildings across the UK to join in!

We’re also co-ordinating with International Mito Patients to have all the buildings added to their global map of mito awareness, which will be a fantastic show of the strength of this community around the world.

If there’s any buildings local to you that you think could light up green for mito, we’re happy to provide a template of what to ask them if needed, or let us know if you’d like us to contact them for you! Head to the webpage linked below to see the most up-to-date list of buildings lighting up…

World Mitochondrial Disease Week & Light Up For Mito

World Mito Week

World Mito Week is approaching, a global event which raises awareness of mitochondrial disease among doctors and the general public, and aims to improve the lives of people affected by mito.

It is an initiative of International Mito Patients (IMP) which unites mito patient organisations around the world to lead a global mito movement, and we get involved every year by asking buildings across the UK to light up in green to raise awareness, joining the campaign on social media, and organising our Glow Walks (more details above!)

Light Up For Mito (LUFM) is an awareness campaign which takes place on the Saturday of World Mito Week (19th September this year!). Each September, many monuments, landmarks and buildings light up green to raise awareness, and My Mito Mission take part in the campaign each year by encouraging buildings across the UK to join in!

We’re also co-ordinating with International Mito Patients to have all the buildings added to their global map of mito awareness, which will be a fantastic show of the strength of this community around the world.

If there’s any buildings local to you that you think could light up green for mito, we’re happy to provide a template of what to ask them if needed, or let us know if you’d like us to contact them for you! Click here to see the most up-to-date list of buildings lighting up.

 

Mito Glow Walk 2026!

Our Glow Walk awareness-raising event for World Mito Week is back! On the evening of Saturday 19th September, don your ‘glowiest’, green outfit (if you wish) and join us to raise awareness of mitochondrial disease in Halifax and beyond.

For those impacted by mitochondrial disease, awareness is so vital. Living with a little-known illness can be very isolating, and events like these show the mito community that there are lots of people out there who care.

Walk with us from Tesco Haugh Shaw Road, loop around Halifax and back to Wainhouse Tower, which will be lit up green for World Mito Week! We’re meeting at 6pm for 6:30pm set off. Please fill in the form linked below to RSVP, so we know how many glow sticks we need! Contact us with any questions.

We hope to see you there!

Not local? You can organise your own glow walk very easily – just pick a route, as short or as long as you’d like, order some of our glow sticks (for free!) and bring your family & friends along! Whether it’s just you and your household, or a whole group, you’ll be helping us to raise awareness of mitochondrial disease across the nation.

World Mito Week Round Up 2026

Glow walk news

Our Glow Walk awareness-raising event for World Mito Week is back! On the evening of Saturday 19th September, don your ‘glowiest’, green outfit (if you wish) and join us to raise awareness of mitochondrial disease in Halifax and beyond.

For those impacted by mitochondrial disease, awareness is so vital. Living with a little-known illness can be very isolating, and events like these show the mito community that there are lots of people out there who care.

Walk with us from Tesco Haugh Shaw Road, loop around Halifax and back to Wainhouse Tower, which will be lit up green for World Mito Week! We’re meeting at 6pm for 6:30pm set off. Please fill in the form to RSVP, so we know how many glow sticks we need! Contact us with any questions.

We hope to see you there!

Not local? You can organise your own glow walk very easily – just pick a route, as short or as long as you’d like, order some of our glow sticks (for free!) and bring your family & friends along! Whether it’s just you and your household, or a whole group, you’ll be helping us to raise awareness of mitochondrial disease across the nation.

Our first ever Mito Community Day in Glasgow!

With people from the mito community and some of the top mitochondrial researchers travelling from all over to attend, we were thrilled to see information being shared, people meeting for the first time, and the sense of community in the room.

We all have the same goals – to find treatments and a cure for mitochondrial disease, and power awareness & support for those affected. Events like these are where we can hear from everyone working to make that happen, and understand different perspectives on how we’ll get there.

Thank you to all involved – we’re so glad to be able to organise these kinds of events, and we couldn’t do it without you!

Thank you to our missionee Danielle for the photos.

Our First Ever Mito Community Day in Glasgow!

With people from the mito community and some of the top mitochondrial researchers travelling from all over to attend, we were thrilled to see information being shared, people meeting for the first time, and the sense of community in the room.

We all have the same goals – to find treatments and a cure for mitochondrial disease, and power awareness & support for those affected. Events like these are where we can hear from everyone working to make that happen, and understand different perspectives on how we’ll get there.

Thank you to all involved – we’re so glad to be able to organise these kinds of events, and we couldn’t do it without you!

Thank you to our missionee Danielle for the photos.

Our First Ever Mito Community Day in Glasgow!

On Saturday 20th June, we’re inviting the mitochondrial disease community to join us for a day of

learning, connection and networking hosted by the University of Glasgow. This includes anyone with a diagnosis and anyone with a loved one

who has, or had a diagnosis. It’s free to attend, and lunch/refreshments will be provided. A travel fund will be available.

​

Please fill in the form here to register: tinyurl.com/glasgow-mito​

​

Any questions, just get in touch! We hope to see many of those impacted by mito there.

Our First Ever Mito Community Day in Glasgow!

Scottish day

On Saturday 20th June, we’re inviting the mitochondrial disease community to join us for a day of learning, connection and networking hosted by the University of Glasgow. This includes anyone with a diagnosis and anyone with a loved one who has, or had a diagnosis. It’s free to attend, and lunch/refreshments will be provided. A travel fund will be available.

​Please fill in the form here to register.

​Any questions, just get in touch! We hope to see many of those impacted by mito there.

Glasgow Event Poster

Mito Meet Up 2024: A huge success!

We’re pleased to report that this year’s Meet Up event was another huge success!
Twenty-three families impacted by mitochondrial disease were represented at our annual event for missionees to meet, socialise, take part in activities & workshops and have a fun weekend away from normal life.
This event was generously funded by the National Lottery Community Fund. Thank you to National Lottery Players!

We had lots on offer, from medical workshops with Dr Yi Ng and Dr Renae Stefanetti…

…to research workshops with Dr Maria O’Hanlon, Research Manager, The Lily Foundation as well as Professor Kostas Tokatlidis, Fara van der Schans and Dr Daniela Vitali who video called in from the University of Glasgow…

…and an inspiring journalling workshop with our My Mito Mission counsellor Karen Baker.

We offered relaxing holistic therapies throughout the weekend, kindly donated by Emma Richardson of Hebask Treatments, and Sharon Berry of Alpha Omega Holistics, as well as 1-1 counselling sessions with Karen Baker of KJB Counselling.
Our volunteers worked hard to ensure an exciting, stress-free weekend for attendees, with Chloe, Rebecca, Jason, Sophie, Dawn & Liz running craft stalls and outdoor activities for the kids.

Volunteers Sue and Tony helped to look after missionee Katie’s family across the weekend, building on a very special bond formed at last year’s Meet Up.

“We definitely feel the love. So sad to be home. Phoebe cried for almost the whole train journey and Thomas wants Tony to take him to school. Tony and Sue, you are officially not just Mito Meet Up adopted grandparents, [you’re] forever adopted grandparents.”
-Elaine & Leigh, Katie’s parents

On our first night, we hosted a ‘Speed Meet’ to allow missions to connect with some people they might not have before and ease us into the weekend.
We also had Karen hosting a film and music quiz with prizes for first, second & third place! Our winners were pretty proud of themselves…

Saturday was a big day, firstly with our bereavement workshop taking place in the morning coordinated by co-founder and chair Christine and her husband Peter.

We hosted two medical workshops and two research workshops, to ensure that all who wanted to, could attend.

A few of our missions set sail for Saturday afternoon, enjoying a fully accessible canal boat trip kindly provided by Safe Anchor Trust. We would also like to thank Focus4Hope for the use of their minibus.

We had a visit from Abel’s Mini Farm petting zoo, which was a delightful experience for adults and kids alike!

We hosted an entertainer for the kids on Saturday evening, who ensured they were very entertained with magic, music, and balloon swords!

Our final day came along, much to everybody’s disappointment, but we had a lot of fun at our fundraising and awareness stalls, where missions could spend the ‘tokens’ given out in their welcome packs and get inspired by the ideas that filled the room!

Our BSL interpreter Michelle was incredible, providing interpretation for our hard of hearing missions Louise & Alison.
“What made it so special was having a BSL interpreter, I did not miss a single word! Thank you.”
-Alison

Reviews of the weekend included:
“From the minute we stepped through the hotel door it was like we had met you before, you made [us] so welcome, you went above and beyond to make our weekend special. Thank you just isn’t enough, honestly we are so grateful, you are all gems and a great inspiration. You all must be so proud for the amount of smiles you put on people’s faces this weekend… Can’t wait to meet up with you all again, if only the world was full of a mito family like you.”
“Every minute has been amazing. It feels as though I have known everyone forever. I am blown away at the dedication from every single person! So grateful to have made memories to treasure forever.”
“I have really enjoyed being here and being a part of everything. Everybody is so friendly and I was never made to feel left out. I’ve been made to feel so welcome and it’s been lovely meeting new people.”
“Your volunteers are so amazing, so caring, so kind and compassionate…”
“The best weekend!”

It was clear how much it meant to our missions to have time away from normal life, and to be around people who just ‘get it’.

It’s so important for us to provide this unique experience for people who are impacted by mitochondrial disease. Mito is a cruel, debilitating, potentially life-limiting illness with no treatments or cure, and it can be a very lonely diagnosis.

However, charities like My Mito Mission can make a huge difference, providing support, raising awareness, and inspiring vital research.
A huge thank you goes out to:
Our staff, trustees and volunteers- we couldn’t possibly do it without you!
Our voluntary service providers- photographer John Steel, BSL interpreter Michelle, holistic therapists Emma Richardson (Hebask) and Sharon Berry (Alpha Omega Holistics), and our counsellor Karen Baker (KJB Counselling).
Our medical and research guests, for their brilliant insights.
The staff at Holiday Inn Brighouse, who were an absolutely huge help in every way!
Our videographer Jack Masterson, who ensured a comfortable environment for all involved in our filmed interviews.
And finally, a massive thank you to our funders at the National Lottery Community Fund. Thank you to National Lottery players for allowing us to support people with mitochondrial disease.

Mito Meet Up 2024: A huge success!

My Mito meet up 2024 news imageWe’re pleased to report that this year’s My Mito Meet Up was another huge success!

Read on and be sure to check out our fabulous video of the event here on YouTube or at the end of this article.

Twenty-three families impacted by mitochondrial disease were represented at our annual event for missionees to meet, socialise, take part in activities & workshops and have a fun weekend away from normal life. This event was generously funded by the National Lottery Community Fund. Thank you to National Lottery players!

Mini petting farm My Mito Meet Up

We had lots on offer, from medical workshops with Dr Yi Ng and Dr Renae Stefanetti…

medical workshop at meet up

…to research workshops with Dr Maria O’Hanlon, Research Manager at The Lily Foundation as well as Professor Kostas Tokatlidis, Fara van der Schans and Dr Daniela Vitali who video called in from the University of Glasgow…

maria o'hanlon

…and an inspiring journalling workshop with our My Mito Mission counsellor Karen Baker.

workshop with missionees

We offered relaxing holistic therapies throughout the weekend, kindly donated by Emma Richardson of Hebask Treatments, and Sharon Berry of Alpha Omega Holistics, as well as 1-1 counselling sessions with Karen Baker of KJB Counselling. Our volunteers worked hard to ensure an exciting, stress-free weekend for attendees, with Chloe, Rebecca, Jason, Sophie, Dawn & Liz running craft stalls and outdoor activities for the kids.

arts & crafts

Volunteers Sue and Tony helped to look after missionee Katie’s family across the weekend, building on a very special bond formed at last year’s Meet Up.

katie's familysue & tony with katie's family

“We definitely feel the love. So sad to be home. Phoebe cried for almost the whole train journey and Thomas wants Tony to take him to school. Tony and Sue, you are officially not just Mito Meet Up adopted grandparents, [you’re] forever adopted grandparents.”

-Elaine & Leigh, Katie’s parents

On our first night, we hosted a ‘Speed Meet’ to allow missions to connect with some people they might not have before and ease us into the weekend. We also had Karen hosting a film and music quiz with prizes for first, second & third place! Our winners were pretty proud of themselves…

quiz quiz winners

Saturday was a big day, firstly with our bereavement workshop taking place in the morning coordinated by co-founder and chair Christine and her husband Peter.

bereavement table

We hosted two medical workshops and two research workshops, to ensure that all who wanted to, could attend. A few of our missions set sail for Saturday afternoon, enjoying a fully accessible canal boat trip kindly provided by Safe Anchor Trust. We would also like to thank Focus4Hope for the use of their minibus.

canal boat canal boat fun

We had a visit from Abel’s Mini Farm petting zoo, which was a delightful experience for adults and kids alike!

petting zoomini farmkate with a duckmini petting farm

We hosted an entertainer for the kids on Saturday evening, who ensured they were engrossed in magic, music, and balloon swords!

kids entertainer

Our final day came along, much to everybody’s disappointment, but we had a lot of fun at our fundraising and awareness stalls, where missions could spend the ‘tokens’ given out in their welcome packs and get inspired by the ideas that filled the room!

sabrina stallgoodie bag

sophie at a stallchristine & danielle

tombolainspiration board

Our BSL interpreter Michelle was incredible, providing interpretation for our hard of hearing missions Louise & Alison.

“What made it so special was having a BSL interpreter, I did not miss a single word! Thank you.”

-Missionee Alison

Reviews of the weekend included:

“From the minute we stepped through the hotel door it was like we had met you before, you made [us] so welcome, you went above and beyond to make our weekend special. Thank you just isn’t enough, honestly we are so grateful, you are all gems and a great inspiration. You all must be so proud for the amount of smiles you put on people’s faces this weekend… Can’t wait to meet up with you all again, if only the world was full of a mito family like you.”

“Every minute has been amazing. It feels as though I have known everyone forever. I am blown away at the dedication from every single person! So grateful to have made memories to treasure forever.”

“I have really enjoyed being here and being a part of everything. Everybody is so friendly and I was never made to feel left out. I’ve been made to feel so welcome and it’s been lovely meeting new people.”

“Your volunteers are so amazing, so caring, so kind and compassionate…”

“The best weekend!”

It was clear how much it meant to our missions to have time away from normal life, and to be around people who just ‘get it’.

It’s so important for us to provide this unique experience for people who are impacted by mitochondrial disease. Mito is a cruel, debilitating, potentially life-limiting illness with no treatments or cure, and it can be a very lonely diagnosis.

However, charities like My Mito Mission can make a huge difference, providing support, raising awareness, and inspiring vital research.

A huge thank you goes out to:

Our staff, trustees and volunteers- we couldn’t possibly do it without you!

Our voluntary service providers- photographer John Steel, BSL interpreter Michelle, holistic therapists Emma Richardson and Sharon Berry, and our counsellor Karen Baker.

Our medical and research guests, for their brilliant insights.

The staff at Holiday Inn Brighouse, who were an absolutely huge help in every way!

Our videographer Jack Masterson, who ensured a comfortable environment for all involved in our filmed interviews.

And finally, a massive thank you to our funders at the National Lottery Community Fund. Thank you to National Lottery players for allowing us to support people with mitochondrial disease.

building a towergroup pic

Marvellous My Mito Meet-Up 2023!

Our missionees from around the UK came together at the Holiday Inn, Brighouse for our second annual ‘meet up’ on Friday 13th, Saturday 14th and Sunday 15th October.

We had an amazing time making new connections, renewing existing friendships, gaining new insights, creating awareness-raising resources, getting inspired and of course having fun along the way.

We were delighted to be awarded a fabulous £10,000 from the National Lottery Community Fund to help make it happen.

Over the weekend we held three informative workshops on the subjects of bereavement, research and the medical aspects of mito.

Our bereavement workshop enabled those families who have lost loved ones to mitochondrial disease to join together in honouring them and explore ways to form continuing bonds going forward. Beautiful lanterns were made in their names along with hearts for our memorial tree – all displayed for the rest of the weekend in our poignant remembrance area.

The research workshop was headed up by Professor Kostas Tokatlidis accompanied by Fara Van Der Schans both from the team at the School of Molecular Biosciences, University of Glasgow. Attendees were able to hear information and updates on research into mitochondrial disease and mitochondrial dysfunction – and its potential to bring breakthroughs for many common conditions as well as mito. A Q&A rounded off a fascinating and all-too-short hour.

Our medical workshop was lead by Professor Grainne Gorman and some of her team from The Newcastle Mitochondrial Disease Clinic for Adults and Children – Doctor Yi Ng and Doctor Renae Stefanetti. Mitochondrial disease patients and their families had a valuable and rare opportunity to ask questions in a non-clinical setting with another fascinating question and answer session.

Everyone who attended the workshops were in agreement that they had been a valuable part of the weekend and that much still needed to be done to increase and fast track research and improve medical services.

Marvellous My Mito Meet Up 2023!

cherished connections news imageOur missionees from around the UK came together at the Holiday Inn, Brighouse for our second annual ‘meet up’ on Friday 13th, Saturday 14th and Sunday 15th October.

We had an amazing time making new connections, renewing existing friendships, gaining new insights, creating awareness-raising resources, getting inspired and of course having fun along the way.

We were delighted to be awarded a fabulous £10,000 from the National Lottery Community Fund for our meet up.  Huge thanks to them and all National Lottery players.

Petting zoo and lottery bereavement table and lottery

Over the weekend we held three informative workshops on the subjects of bereavement, research and the medical aspects of mito.

The research workshop was headed up by Professor Kostas Tokatlidis accompanied by Fara Van Der Schans both from the team at the School of Molecular Biosciences, University of Glasgow.   Our medical workshop was lead by Professor Grainne Gorman and some of her team from The Newcastle Mitochondrial Disease Clinic for Adults and Children – Doctor Yi Ng and Doctor Renae Stefanetti.

workshop photo my mito meet up 23

Mitochondrial disease patients and their families had a valuable and rare opportunity to hear information first hand and ask questions.  Everyone who attended the workshops were in agreement that they had been a valuable part of the weekend and that much still needed to be done to increase and fast track research and improve medical services.

Fara and Kostas My Mito Meet Up '23 Grainne Gorman My Mito Meet Up '23

Amongst the many activities to suit all ages was creating our ‘My Mito Montage’.   This is a collaborative piece of art representing our connectedness and feelings about being impacted by mitochondrial disease.  It will be treasured by our charity, kept at our HQ and used to help illustrate our message in the future.  Our montage was made possible by our trustee and co-event organiser, Amanda Caldwell and her fabulous team from The Space at Field Lane.

Danni with montage square Chloe with montage square

My Mito Montage

Our invaluable volunteers – including our terrific trustees – worked amazingly hard both before and during the event to make it as magical as possible for everyone attending.  

We also had some very special volunteers who donated their professional services free of charge.  Julie Acton from Clinical Reflexology in Calderdale, Karen Baker of KJB Counselling, Sharon Berry from Alpha Omega Holistics and Howard Pickles from Templars Photography.

Volunteers image news

Having mitochondrial disease can be incredibly isolating when so little is known about it by those around you. That’s why getting everyone together face to face is so important … the peer support that results is priceless.  During our weekend friendships were made and nurtured which will bring people comfort and support in their future journeys dealing with the impacts of mito. 

A picture speaks a thousand words and we hope photos begin to illustrate the precious connections and wonderful memories that we were made at our My Mito Meet Up ’23.

Aiman Rayan Nathan connected news Jake and Alison connection kids playing news imageSabring and Susan news image

We would like to thank all our supporters, without you we wouldn’t be able to do what we do!

My Mito Meet-Up 2023 Coming Soon!

Excitement is building within My Mito Mission as the My Mito Meet Up 2023 approaches, taking place 13-15th October 2023.

During the weekend our missions from around the UK are getting together for a wonderful weekend of fun, socialising and above all, support and new friendships.

Just one of the support projects we have been able to complete thanks to our fabulous supporters. More news of the weekend to follow soon!

My Mito Meet Up 2023 Coming Soon!

My Mito Meet Up 2023 News ImageExcitement is building within My Mito Mission as the My Mito Meet Up 2023 approaches, taking place 13-15th October 2023.

During the weekend, 22 of our missions from around the UK are getting together for a wonderful weekend of fun, learning, socialising and above all, support and new friendships.

Just one of the support projects we have been able to complete thanks to our fabulous supporters … and a huge amount of help from The National Lottery Community Fund.

National Lottery Community Fund logo

Pick-Me-Up Parcels

We are thrilled to have been able to partner up with The Willow Foundation and nominate some of those directly impacted by mito to receive a beautiful box of gifts. Just one of the support projects that we are able to help provide thanks to our supporters.

Huge thanks to The Willow Foundation for providing this thoughtful and heart warming service.

Pick-Me-Up Parcels.

Willow FoundationWe are thrilled to have been able to partner up with The Willow Foundation charity and nominate some of those directly impacted by mitochondrial disease to receive a beautiful box of gifts. This is just one of the support projects that we are able to help to provide thanks to all our wonderful supporters.

Huge thanks to The Willow Foundation for providing this thoughtful and heart warming service.

Susan Willow box

Steph willow box