Ripples make waves! 9 reasons to keep raising awareness about mito - News - The Lily Foundation
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Ripples make waves! 9 reasons to keep raising awareness about mito


5 August 2020

With World Mitochondrial Disease Week (September 13-19) just around the corner, there's never been a better time to make a noise about mito – and it's not all about generating funds. Here are eight great reasons to raise awareness.

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1. Awareness leads to earlier diagnosis and increased detection rates

Educating healthcare professionals about mitochondrial disease reduces the likelihood that early symptoms of the disease are missed in patients. This is especially important given that mitochondrial disease can affect any organ in the body, leading to a wide range of symptoms that can easily be confused with other illnesses (e.g. liver or heart disease). Early screening for mitochondrial disease reduces the risk of patients being misdiagnosed and having to suffer months – sometimes years – of confusion, uncertainty and misdirected clinical treatments.

2. Awareness helps drive research

The best way to find a cure for mitochondrial disease is through research. Over the last decade, worldwide studies into mitochondrial disorders have led to major advances in areas such as fertility treatments and genetic diagnostics, as well as the development of potentially life-changing therapies. Scientists have also found evidence linking mitochondrial disease to other serious illnesses such as autism, diabetes, Parkinson's and Alzheimer's. The more we learn about mitochondrial disorders, the more it becomes evident that research in this field is vital and worthwhile. Communicating this message is a big part of raising awareness.

3. Awareness creates real positive change

In 2015, The Lily Foundation successfully lobbied to change UK law on mitochondrial donation, an IVF technique that makes it possible for women with some forms of mitochondrial disease to have children without the condition. This triumph was only possible thanks to years of determined campaigning, from grassroots initiatives to the highest level of government. Jane Ellison, Parliamentary Under Secretary for the Department of Health at that time, said: "I want to pay tribute to the Lily Foundation, a charity founded by families who have lost their children to serious mitochondrial disease, and who have shown us the human suffering behind this scientific advance."

4. Awareness helps secure grants

The more people know about mitochondrial disease, the more likely it is that funding organisations will award grants to charities that support those who are affected. For example The Lily Foundation was recently granted nearly £10,000 of National Lottery funding to help provide much-needed support to vulnerable mito families during the COVID-19 crisis. Keeping mitochondrial disease in the public spotlight, and highlighting devastating impact it has on people's lives, helps ensure that grant applications of this kind are successful.

5. Awareness drives public donations

This might seem like an obvious one, but it's too important not to mention. Like most small charities, The Lily Foundation depends almost entirely on donations from members of the public and businesses in order to do its work. Grassroots fundraising – from sponsored sports events to collection tins, cake sales and coffee mornings – is our lifeblood, and awareness raising is vital to its success. COVID-19 has made fundraising in this way more difficult, so its more important than ever to keep mitochondrial disease in the spotlight.

6. Awareness connects people

Raising awareness is rarely something you do alone. People can achieve amazing things when they work towards a common purpose, and the feeling of togetherness that results from that is a reward in itself. An awareness raising project often starts at home and then grows to involve extended family, friends, work colleagues and even total strangers. New friends are made, and people affected by mitochondrial disease who may previously have felt isolated are brought together. At a time when staying connected with others 'outside your bubble' is more important than ever, raising awareness about mitochondrial disease is a great way to reach out.

7. Awareness destigmatises the disorder

Ignorance about serious illness and disability can breed fear and intolerance, which in turn leads to stigmatisation. The best way to counter this, and the social isolation than results from it, is through education and information. Raising awareness about mitochondrial disease sheds light on the everyday challenges faced by those who are affected, leading to greater understanding and empathy. If your awareness raising project leads to just one more person learning something new about mitochondrial disease, then a positive change has been made.

8. Awareness makes ripples that become waves

When The Lily Foundation was founded in 2007, few people had heard of mitochondrial disease. Diagnosis was something of a lottery, and there was barely any support or information available for those affected. Fast forward to 2020, and the picture is much brighter. There are mitochondrial research centres operating across the UK, specialist care available on the NHS, and a wealth of information and resources provided by a global network of mitochondrial disease charities and patient organisations. There's even a storyline about mitochondrial disease and its impact on Coronation Street! None of this change would have been possible without small, individual acts of awareness raising. There's still a lot of work to be done, so next time you're wondering how you can make a difference, remember that ripples make waves!

How you can help

Signing up to a charity event or challenge, or organising your own, is one of the best ways to raise awareness about mitochondrial disease. Browse our events page for inspiration. 

Social media is a powerful tool for raising awareness. Share Lily posts, or post about your own experience of mito using the #MitoAware hashtag.

If you've been affected by mitochondrial disease personally, you can also approach your local newspaper or radio station with your story. Let them know that World Mitochondrial Disease Week is coming up, and remind them about the Coronation Street storyline too.

Visit our online shop for t-shirts, gifts and other merchandise to help you raise awareness. A Lily bear, baseball cap, water bottle or bumper sticker can start a whole conversation about mito!

Subscribe to our newsletter, or follow us on Facebook or Twitter, to keep informed about our awareness raising activities during World Mitochondrial Disease Week.

See our work in action

Being diagnosed with mitochondrial disease can be not only a frightening and upsetting time, but it can also be very lonely. Because mito is so rare, sometimes friends and family just don’t understand, so it’s hard to find people who are in the same situation to talk to, to share hopes and fears with, and find support.

That’s why The Lily Foundation exists.

Watch PhD student Bal’s story about her mitochondrial disease diagnosis, and how The Lily Foundation helped to give her a voice.