Raising Awareness of Mitochondrial Disease

Investing in medical research now is critical to future-proofing the NHS and supporting our frontline staff in delivering the best possible care. The UK must invest in medical research if we are to find a cure for the most debilitating of diseases.

The WCMR team at Newcastle University and The Newcastle upon Tyne Hospitals Foundation Trust are kindly asking MPs to find out more about mito as part of our campaign called Project Pearl that aims to raise the profile of mitochondrial disease for the benefit of the whole community. This follows a parliamentary drop-in event hosted by the APPG for Rare, Genetic and Undiagnosed Conditions during which was an opportunity for parliamentarians to speak with people living with mitochondrial disease and their carers, experts on research for mitochondrial disease and healthcare specialists on mitochondrial disease. Read on to find out more.

Mito Facts:

  • Mitochondrial disease (mito) is a common genetic disorder that can be very serious and often fatal.
  • It affects all age groups and can cause an array of life-limiting symptoms, including extreme fatigue, seizures and strokes.
  • Mito is more common than you might think; 1 in 200 people in the UK carry a faulty mitochondrial gene.
  • Despite mito’s seriousness, a lack of funding has meant the disease can be a slow to diagnose and difficult to treat. Low awareness of mito means that some people go undiagnosed, living without treatment and risk unknowingly passing mito onto their children.
  • Since mitochondria, the powerhouses of the cell, perform so many critical functions, mito is the root cause of hundreds of other symptoms and diseases. That’s why mito research plays such a crucial role in treating many other diseases, like dementia, epilepsy, Parkinson’s and cancer.
  • Investing in mito research is crucial if we are to find a cure and improve the quality of life for thousands of mito patients.
  • By combining the best mito research minds in the UK with government investment, a mitochondrial research centre will be best placed to make major advancements in mito as well as other prevalent diseases.

One thing is for sure – without research, there will never be hope for a cure. Support our campaign and let’s find one together.

If you are a parliamentarian, here is how you can help:

  • Share the following Tweet: “I support MITO research. Please share & help raise awareness of mitochondrial disease for the whole mito community #projectpearl” with the infographic below:
  • Follow our @MitoResearch social media & visit our website for updates.
  • Register your interest in the APPG for Rare, Genetic and Undiagnosed Conditions by emailing:
    [email protected].