Our support is not limited to those with a mitochondrial disease diagnosis. That’s because for every person diagnosed there may be parents, grandparents, a partner, children and wider family who all need help to understand the illness, support the person directly affected and to deal with the impact it may have on themselves. We believe that supporting people’s ‘support systems’ can be just as important as supporting those directly affected.
Our mission is to increase everyone’s knowledge and understanding of mitochondrial disease as well as the far-reaching potential of mitochondrial research.
Having a lesser-known disease, like mito, can feel isolating and frustrating due to the lack of understanding from those around you.
Can you imagine having, say, cancer and when you tell people you are met with blank looks? Awareness helps to combat this lack of validation and allows people with mito to feel seen, heard and supported.
Raising awareness ensures that mitochondrial disease receives the rightful attention it deserves, just like more well-known conditions of similar prevalence. This means gaining equity for mito in its recognition, understanding, support, medical care and research. This will, in turn, drive increased support, research and ultimately, treatments and a cure.
Learning more about how our mitochondria work could drive breakthroughs for many common illnesses, as well as improving general well-being and how well we age. Yet, this amazing potential is largely unknown. Awareness is crucial to help everyone understand the incredible benefits of mitochondrial research could bring and why it matters to everyone.
We raise awareness through a variety of methods including our social media pages, participating in networking groups, giving speeches at organisations such as Rotary, launching awareness campaigns, PR and hosting numerous fundraising events across our missions.
We use social media to engage with the mito community and with supporters, whilst consistently building on our online presence with the aim of educating the public about mitochondrial disease and the different ways it can affect families.
Through our missions, we are able to reach and engage with an array of different communities across the UK, and we equip our supporters and volunteers with the knowledge and resources they may need to advance our message.
Our events, and our missions’ events, allow us to raise both awareness and funds for our vital cause, and we take every opportunity to tell the unique stories of different individuals and families and represent the diversity of people, symptoms and experiences that we see amongst people with mitochondrial disease.
We aim to provide and increase support for those impacted by mitochondrial disease of any age.
Through our support, we aim to create a community where people living with the impact of mito can connect and find others who understand their experiences.
When we ask those with mito what they would like to change, a strong theme in their answers is, “It’s a lonely diagnosis.”
By sharing their stories and building meaningful connections, this support and the peer support that results can reduce feelings of isolation whilst gaining a true sense of belonging.
“I now feel part of the solution in raising hopes of a cure for the illness that affects our son & I”
Steph, Steph & Jake’s Mito Mission
Our charity powers hope and enables positivity among those affected by mito, by offering a constructive means to dealing with their illness, in what can otherwise feel like a hopeless situation.
Having a personalised mission brings a better understanding about their condition to their family, friends and communities.
Living with mito, as a lesser-known illness, can come with its own unique challenges, on top of an already devastating diagnosis. We aim to make sure that everyone affected by mito feels supported, understood, and empowered, by providing a space where their voices are heard and their experiences are validated.
Through our ‘My Mito Directory,’ we offer links to information, charities, and resources related to mitochondrial disease. We also provide guidance via email, phone, social media and website enquiries.
We advocate for those affected by mito by through our website, social media, PR, networking events, speaking engagements and through hosting and facilitating awareness and fundraising events.
Research is hope, and hope is a vital form of support. There are currently no treatments or cure for mitochondrial disease. Only through more research can people be free from the devastating impact of this illness.
We nominate people to receive other charities’ benefits and services where appropriate, such as experiences, gift boxes and general support. These charities can be found on our My Mito Directory.
Our free medical alert wristbands signpost medical professionals to clinical guidance and much more. They compliment other medical alert tools available from our friends at The Lily Foundation & CamRARE.
We provide ‘missions’, run by an individual or family affected by mitochondrial disease, who wish to share their story, raise awareness, and funds for research in their name. Each mission is like a ‘mini charity’ in their own right, all under the My Mito Mission umbrella. This allows people from across the UK to rally around a local mission or support the charity as a whole. Any money raised goes towards our central funds and used to improve the lives of everyone impacted.
We facilitate and encourage peer support between our mission families, such as holding monthly online get-togethers, having WhatsApp and Facebook groups and our annual My Mito Meet Up. These generate further mutual support outside of the charity.
A dedicated webpage, leaflets and support materials give our missions an effective way to educate others and raise awareness, telling their stories. Additionally, mission families have a say in key charity decisions, such as choosing research projects.
We are developing a bespoke counselling service for our missions headed by a highly qualified professional with personal experience of mito. This includes different forms of counselling, catered to individual need. We plan to expand this to the wider mito community.
We are grateful to the Souter Charitable Trust
for their contribution to our counselling service.
Every year we host a ‘Meet Up’ where all of the missions come together in a hotel for a weekend of community, activities, informative workshops and holistic therapies. This is a chance for all those affected by mito, including families, carers and friends to meet others on the same journey as them and learn more about the illness. The weekend also includes talks from medical and science professionals where attendees can have questions answered first hand in a non-clinical setting.
The weekend’s main aim is to allow those affected by mito to feel supported, validated and relaxed in an environment where they don’t need to justify themselves or their illness.
We are grateful to the National Lottery Community Fund and National Lottery players who have generously supported our 2023, 2024 and 2025 Meet Ups.
Mitochondrial research provides hope to everyone impacted by mito for future treatments, care and, ultimately, a cure. Additionally, it could bring treatments and cures for many common illnesses like cancer, dementia and stroke.
Further research into mitochondria and their dysfunction could pave the way for groundbreaking treatments, enhanced care, and ultimately, a cure for those living with mitochondrial disease…
…but the impact of this research extends far beyond mito itself. Mitochondrial dysfunction could be the key to a wide range of common illnesses such as cancer, diabetes, bipolar disorder, and many more- conditions that affect MILLIONS of people in the UK alone.
The health of our mitochondria, which are present in nearly every cell in our body, is crucial for overall well-being. Recent studies suggest that mitochondrial function plays a key role in aging and many other biological processes, making this research vital for EVERYONE’S long-term health.
Here are some quotes which show what experts around the globe can tell us about the incredible potentials of mitochondrial research.
We are working to build relationships and collaborate with organisations across the the UK and globally who have a focus on or interest in mitochondrial research. This includes universities, other mitochondrial disease and non-mitochondrial disease charities, bioscience companies, research institutions, grant funders etc.
Through developing these relationships, we are able to increase our own knowledge about the world of research and learn how we can best inspire and advocate for more vital mitochondrial research.
We dedicate time to advocating and lobbying for more mito research to medical professionals, scientists, researchers, politicians, media, educational facilities, the corporate world and anyone who may be able to influence change.
We are passionate about bringing more and more people on board with our cause to fulfil our vision of a world where the importance of mitochondrial research is fully understood, appropriately funded and fulfils its incredible potential to transform medicine and global health.
To date, our research awarding has been in partnership with The Lily Foundation, the largest UK charity for mitochondrial disease founded in 2007. Through this collaboration, we benefit from their established processes, expertise and connections within the research community. This ensures that the awards we make are directed toward research projects that have the potential to create meaningful impact for those with mito.
Once The Lily Foundation have put forward potential projects to fund, we consult with our impacted families before the trustees make a final decision, using the data collected, on which research projects we wish to support. The money is then granted to The Lily Foundation to contribute towards those projects.
A Contribution of £24,500
Genome Editing
Genome editing to treat mitochondrial DNA disease. Dr Michal Minczuk’s lab aims to develop a gene therapy technique to remove faulty mitochondrial DNA (mtDNA) in an animal model of mitochondrial disease. Researchers believe that removing faulty mtDNA in this way could lead to an improvement in the symptoms seen in patients with mitochondrial disease.
A Contribution of £10,000
RUDY Platform
RUDY is an online platform that allows patients to record their lived experiences of specific diseases over time. This project is to include mitochondrial disease to enable researchers to draw on data from a wide pool of mitochondrial disease patients by using search metrics such as disease type, gender, age, medication, symptoms and reproductive history.
A Contribution of £27,237
Neuropsychiatric and brain imaging phenotyping of primary mitochondrial diseases
Dr Alessandro Colasanti’s research project aims to understand how the involvement of mitochondria in the brain contributes to psychological symptoms of mitochondrial disease.
A Contribution of £20,000
The EMERALD study – developing a new treatment for hearing loss
Professor Gráinne Gorman and Dr Renae Stefanetti from Newcastle University will test whether a new remote microphone can enhance the use of standard hearing aids in patients with mitochondrial disease.
A Contribution of £20,000
Using a mouse model to test nucleoside supplementation for Mitochondrial Deletion and Depletion Syndromes (MDDSs)
Professor Antonella Spinazzola at UCL is testing a new treatment for Mitochondrial DNA depletion and deletion syndromes (MDDSs) using a mouse model.
A Contribution of £24,500
The Leigh Syndrome International Consortium – A patient-driven research network
A consortium set up to establish global best practices of care for Leigh Syndrome (Leigh’s disease) patients by bringing together the world’s leading scientists, clinicians and patient advocacy groups to drive research that will advance understanding, uncover effective treatments and ultimately find a cure.
A Contribution of £13,500
Developing Wearable Technology to Improve Balance in People with Mitochondrial Disease
Prof Robert Pitceathly and Sarah Holmes from UCL are developing and testing a wearable sensor and smartphone app to improve mitochondrial disease patients’ posture and balance when exercising at home.
A Contribution of £12,000
Testing gene therapy for a rare mitochondrial disease (MNGIE)
Dr Jelle van den Ameele from University of Cambridge, alongside Dr Seth Cheetham from University of Queensland and Dr Ramon Marti from Vall d’Hebron Research Institute, are testing a new, safer treatment for MNGIE using gene therapy on mice.
Read how you can support us
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contact@mymitomission.uk | 0300 102 1112
My Mito Mission is a Charity Registered in England & Wales No. 1176616 at c/o KT Hydraulics, Gannex Park, Dewsbury Road, Elland HX5 9AF
