At least 30 Australian children (1 in 200) born every week are at risk of developing some form of a debilitating and potentially fatal disorder that’s the second most commonly diagnosed serious genetic disease after cystic fibrosis...yet few people have heard of mitochondrial disease.
That’s why the Australian Mitochondrial Disease Foundation (AMDF) is urging the public and the medical community to find out more about ‘mito’, increase awareness and help raise funds for research, patient support and education during Global Mitochondrial Disease Awareness Week from 18-25 September.
Capital city landmarks and homes will glow green in the Light Up for Mito campaign; a donation will guarantee a guilt-free sleep-in on National Stay in Bed Day on Sunday 25 September; and a Medical Symposium will bring together experts to discuss mitochondrial health and the significant role our mitochondria – the cells’ powerhouses – play in major diseases like cancer, diabetes and Parkinson’s.
AMDF CEO Sean Murray said mitochondrial disease is a complex disorder that robs the body’s cells of energy, starving muscles and major organs of the power they need to function properly.
“There are few treatments and no cure for mito, which can cause any symptom in any organ at any age. However, 90 per cent of affected people are misdiagnosed, undiagnosed or may unknowingly pass mitochondrial disease on to their unborn children,” Mr Murray said.
“We encourage everyone to stay in bed, ‘light up for mito’, share information on social media and make a donation during Global Mitochondrial Disease Awareness Week to help the AMDF raise awareness and much-needed funds for vital research into a cure.”
Global Mitochondrial Disease Awareness Week (gmdaw.org) features fundraising activities, advocacy and social media initiatives and information sessions. Highlights include:
- In Light Up for Mito, major landmarks will be lit green to mark Global Mitochondrial Disease Awareness Week, including: the Melbourne Star and Perth’s Council House on 18 September, and Brisbane’s Story Bridge and Adelaide Oval on 19 September.
People are also encouraged to replace their porch light with a green bulb for the week and tweet (#lightupformito) or post photos to the Global Mitochondrial Disease Awareness Week Facebook page.
- National Stay in Bed Day – a ‘Sleep-in to Cure Mito’ – when Australians can lie-in guilt-free on Sunday 25 September by donating at stayinbedday.org.au or organising or supporting pyjama parties at their workplace or school on the day or during spring.
People can also become a Stay in Bed Day hero by being sponsored to sleep in or sharing the stories of people affected by mitochondrial disease, featured on the website.
- AMDF Symposium: Does Mitochondrial Medicine Hold the Key to Major Diseases? in Sydney on 22 September, when experts will reveal the latest insights into the link between mitochondrial dysfunction and mitochondrial disease, Parkinson’s disease, diabetes and cancer; new IVF techniques to enable affected women have children free of mitochondrial disease; and how everyone can take care of their mitochondrial health. (amdf.org.au)
- The Bloody Long Walk in Perth on Sunday 25 September, one of seven 35km fundraising ‘walks to cure mito’ from August to November (bloodylongwalk.com.au)
More about mitochondrial disease
AMDF CEO Sean Murray said recent major advances in our understanding of genetics mean mitochondrial disease is now the second most commonly diagnosed serious genetic disease after cystic fibrosis.
“However, awareness of mito in the medical community remains relatively low, particularly for adult- onset and non-life-threatening forms of the disease,” Mr Murray said.
“Mitochondria are the powerhouses within our cells that transform food and oxygen to generate 90 per cent of the energy fuelling our bodies, particularly muscles and major organs like our brain, heart, liver, ears and eyes.
“Lifestyle and environmental factors damage our mitochondria and make them less effective over time, so mitochondrial dysfunction is a significant factor in a range of major diseases and is a key reason humans develop age-related health problems and have a finite lifespan.
“People with mitochondrial disease have genetic mutations that predispose their mitochondria to fail prematurely, which means they may develop mitochondrial disease symptoms anytime in
“Mitochondrial disease can affect both children and adults; due to its genetic basis, the disease often affects multiple family members. Mito can be inherited from a person’s mother, father or both parents, or can arise as a spontaneous genetic mistake at conception.
“A ground-breaking new IVF technique offers hope for women likely to pass on maternally inherited mitochondrial disease to their baby. Called mitochondrial donation, the technique transplants a small number of healthy cells from a donor egg to replace the mother’s faulty mitochondrial DNA. Mito donation has been approved in the United Kingdom, but Australian laws need to change to give affected women the choice to access the technique here.”
About the Australian Mitochondrial Disease Foundation
The AMDF does not receive government funding and relies solely on donations.
Since it was set up in 2009 by family members, friends and doctors of sufferers, the AMDF has funded major research projects, an Australia-wide mitochondrial patient database and priority access to a new Next-Generation DNA Sequencing Facility to enable faster, less expensive and more accurate diagnoses of mitochondrial disease.
In addition to National Stay in Bed Day, the AMDF raises funds through The Bloody Long Walk national series of 35km walks in capital cities from August to November (bloodylongwalk.com.au). Other community initiatives are held during the year by the AMDF, groups, families and individuals.
The AMDF operates a telephone helpline (1300 977 180), runs support groups including teleconferences and a Facebook group, and holds information days and symposia for patients, GPs, specialists and the public.