Charity Info Archives - Page 4 of 10 - Mitochondrial Disease Charity

New Fundraising Milestone!

Thanks to our incredible missionees and supporters we have reached an amazing fundraising milestone.

For the first ever time we have reached £100,000 within a calendar year. We had hoped we might achieve this by the end of the year but, amazingly, we have done it even before the end of October.

Each and every pound is valued and as always we will make every pound count.

Our huge thanks to everyone who helped make this possible. Let’s keep putting energy into mitochondrial disease awareness, support and research!

New Fundraising Milestone!

Thanks to our incredible missionees and supporters we have reached an amazing fundraising milestone.

For the first ever time we have reached £100,000 within a calendar year. We had hoped we might achieve this by the end of the year but, amazingly, we have done it even before the end of October.

Each and every pound is valued and as always we will make every penny count.

Our huge thanks to everyone who has helped to make this fabulous milestone in our story possible. Let’s keep putting energy into mitochondrial disease awareness, support and research!.

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!

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 for our meet up. Huge thanks to them and all National Lottery players.

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.

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.

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.

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.

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.

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!

Excitement 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.

Danielle’s Mito Mission Launches Today!

Meet Danielle, who we are thrilled has joined us this month – with a brand new Mito Mission based in Dundee, and becomes our fourth mission based in Scotland.

It took Danielle 33 years to get a diagnosis. She is therefore very keen to bring hope and empowerment for anyone still experiencing a lack of diagnosis and a medical wilderness – as well as raise vital awareness for mitochondrial disease.

Read Danielle’s journey with the illness and much more on her mission page here.

Danielle's Mito Mission Launches Today.

Meet Danielle, who we are thrilled has joined us this month – with a brand new Mito Mission based in Dundee, and becomes our fourth mission based in Scotland.

Read Danielle’s journey with the illness and much more on her mission page here.

Welcome Katie’s Mito Mission

Today we welcome Katie’s Mito Mission based in Nottingham. Lovely little Katie has five older siblings who are all healthy and show no signs of mitochondrial disease, which made the news of Katie’s diagnosis all the more shocking for her parents, Elaine and Leigh.

Katie’s Mission is our second that is Nottingham based and the two families are finding it a comfort to know each other.

You can read Katie’s story on her webpage which illustrates how frustrating the family’s journey to diagnosis was and how they want other people’s diagnosis story to be much simpler.

Huge welcome to Katie and family.

Welcome Katie's Mito Mission.

Today we welcome Katie’s Mito Mission based in Nottingham.

Lovely little Katie has five older siblings who are all healthy and show no signs of mitochondrial disease, which made the news of Katie’s diagnosis all the more shocking for her parents, Elaine and Leigh.

Katie’s Mission is our second that is Nottingham based and the two families are finding it a comfort to know each other.

You can read Katie’s story on her webpage which illustrates how frustrating the family’s journey to diagnosis was and how they want other people’s diagnosis story to be much simpler. And see all our missions here.

Huge welcome to Katie and family.

Warmly Welcoming Kane’s New Mission!

We are wishing both a happy 1st birthday and a warm welcome to our My Mito Mission family to gorgeous little Kane.

Kane and his family are based in Greenwich, London and are very keen to raise awareness about mitochondrial disease and so have launched their mission today.

They will be grateful for any support for Kane’s Mito Mission. Please read his story and check out all the ways to help on his webpage.

Warmly Welcoming Kane's New Mission!

We are wishing both a happy 1st birthday and a warm welcome to our My Mito Mission family to gorgeous little Kane.

Kane and his family are based in Greenwich, London and are very keen to raise awareness about mitochondrial disease and so have launched their mission today, on his very special day.

They will be grateful for any support for Kane’s Mito Mission. Please read his story and check out all the ways to help on his webpage.

Fly High Beautiful Ronni.

We are devastated to share the news of the passing of one of our ‘missionees’, Ronni, aged just 10 from Ronni & Freddi’s Mito Mission to mitochondrial disease.

Our thoughts are with his loving family – especially mum, Danielle; dad, Keron and sister, Emily.

Even more tragically, Ronni is the second son the family have lost to mito. Danielle and Keron feel very strongly that they do not want others to go through what they are going through. They have set up a tribute fund in honour of Ronni, the proceeds of which will go to Ronni and Freddi’s Mito Mission and to mitochondrial research.

Fly High Beautiful Ronni.

We are devastated to share the news of the passing of one of our ‘missionees’, Ronni, aged just 10 from Ronni & Freddi’s Mito Mission to mitochondrial disease.

Our thoughts are with his loving family – especially mum, Danielle; dad, Keron and sister, Emily.

Even more tragically, Ronni is the second son the family have lost to mito. As mitochondrial disease is a genetic illness, it can sadly impact on more than one child in any family.

Danielle and Keron feel very strongly that they do not want others to go through what they are going through. They have set up a tribute fund in honour of Ronni, the proceeds of which will go to Ronni and Freddi’s Mito Mission and to mitochondrial research.

Research Project Update

Our friends at The Lily Foundation have made a video (Link 1) to explain more about the Neuropsychiatric and Brain Imaging Phenotyping of Primary Mitochondrial Diseases study (Link 2) to which My Mito Mission were delighted to contribute over £27,000 with thanks, as always, to our supporters.

Involvement of the brain in mitochondrial disease is common. Consequences of brain involvement can often include psychological difficulties such as mood symptoms, including instability of mood, depression, agitation, anxiety, or cognitive symptoms. These symptoms are not very well understood in mitochondrial disease but can be greatly disabling and distressing for those affected.
The aim of this research project is to better understand how the involvement of mitochondria in the brain contribute to psychological symptoms of mitochondrial disease. It is hoped that the information from this study will guide us to better design future clinical trials of novel treatment for these disabling symptoms and to restore mitochondrial function in the brain.
To learn more about this project, please watch the Lily Foundation video or follow the links below:

Research Project Update.

Our friends at The Lily Foundation have made a video to explain more about the Neuropsychiatric and Brain Imaging Phenotyping of Primary Mitochondrial Diseases study to which My Mito Mission were delighted to contribute over £27,000 with thanks, as always, to our supporters.

The aim of this research project is to better understand how the involvement of mitochondria in the brain contribute to psychological symptoms of mitochondrial disease. It is hoped that the information from this study will guide us to better design future clinical trials of novel treatment for these disabling symptoms and to restore mitochondrial function in the brain.

To learn more about this project, please watch the Lily Foundation video or follow the links below:

Research Focus: Mito and Neuropsychiatric Disorders – News – The Lily Foundation for research into Mitochondrial Disease and other metabolic disorders

Neuropsychiatric and Brain Imaging of Primary Mitochondrial Diseases – The Lily Foundation for research into Mitochondrial Disease and other metabolic disorders

Welcome Ella’s Mito Mission

Ella’s mission will be run by her parents in Bristol and her grandparents in Huddersfield and we are sure they will get some great support from the north to the south!

You can read Ella’s story on her webpage which poignantly illustrates the vital importance of mitochondrial research.

Welcome Ella's Mito Mission.

We are thrilled to welcome Ella’s Mito Mission to our My Mito Mission family.

Ella is seven months old and her mission will be run by her parents in Bristol and her grandparents in Huddersfield. We are sure they will get some great support from the north to the south!

You can read Ella’s story on her webpage which powerfully and poignantly reminds us of the vital importance of mitochondrial research.

See all our missions and where they are all located on our interactive map.