Walkers to take over the streets of Melbourne

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It’s a Bloody Long Walk towards vital research… 46,200 steps

By Nikki Vasiliadis

In five weeks, more than 3000 people from Melbourne and the surrounding areas will put on their sneakers to participate in The Bloody Long Walk, the national fundraising series of the Australian Mitochondrial Disease Foundation (AMDF).

The series will take place in capital cities around Australia from August through to November and the Melbourne leg of the series will take place on Sunday 23 October 2016.

Participants will walk the 35km course from Yarra Bend Park, Abbotsford to St Kilda Baths, enjoying spectacular scenery along the way while raising vital funds to cure mitochondrial disease (‘mito’); a debilitating, potentially fatal genetic disorder that robs the body’s cells of the energy they need to function properly.

The ability to walk, run or even just stand up unaided can be a daily struggle for people with mitochondrial disease, which has few treatments and no cure.

Australian Mitochondrial Disease Foundation CEO Sean Murray said that while many ‘Bloody Long Walkers’ have a family member or friend affected by mito, most participants are simply local residents keen for an active outdoor challenge that also helps a good cause.

“We’re delighted by the local response to The Bloody Long Walk in Melbourne. The profits from registrations and all donations will help the AMDF support people affected by mito, fund vital research, education and advocacy initiatives,” Mr Murray said.

The AMDF is urging all Melbournians and those in the greater area to support The Bloody Long Walk in any way they can:

+ Register to take part in the event as an individual or a team at www.bloodylongwalk.com.au

+ Sponsor walkers or teams at www.bloodylongwalk.com.au/melbourne

www.amdf.org.au

+ Cheer walkers, joggers and runners along the bloody long way – 46,200 steps taking up to 8 hours! – from 7am to around 4pm on Sunday 23 October.

The first runners are expected to cross the finish line from 10.30am. See the website for information to plan your day out.

Melbourne is also supporting Global Mitochondrial Awareness Week (from 19-25 September) and on 19 September the Melbourne Star will be lit up in green.

Other structures around Australian cities that will also show support by lighting up green are Adelaide Oval and Adelaide Town Hall, Stony Bridge in Brisbane and the Council House in Perth.

What is mitochondrial disease and how many people are affected? Mitochondria are the powerhouses of our cells that generate 90 per cent of the energy fueling our bodies, particularly muscles and major organs like our brain, heart, liver, ears and eyes.

More than 1 in 200 Australians – at least 120,000 people, including 20,000 in Greater Melbourne alone* – have genetic mutations that predispose their mitochondria to fail prematurely, which means they may develop mitochondrial disease sometime in their lives.

Depending on which parts of their bodies are most affected and to what extent, people with mito can lose their sight or hearing, be unable to walk, eat or talk normally, have strokes or seizures, or develop heart problems, liver disease, diabetes, or respiratory or digestive problems.

“In addition to raising funds, The Bloody Long Walk is about making the public and medical profession more aware of the symptoms of mito to ensure proper diagnosis and healthcare,” Mr Murray said. “Many people with the genetic mutations implicated in mito are symptomatic but undiagnosed or misdiagnosed, some are not yet symptomatic, and others are unknowingly at risk of passing the disease on to their unborn children. “One Australian child born each week – 50 children every year – will develop a severe or life-threatening form of mitochondrial disease and half will die in childhood, making mito the second most commonly diagnosed serious genetic disease after cystic fibrosis. “A further 1000 Australian children born each year may develop a mild or moderately disabling form of mito during their lifetime, sometimes not until adulthood,” he said.

The AMDF does not receive government funding and relies solely on donations. Thanks to public support, the AMDF has funded major research projects, an Australia-wide mitochondrial patient database and priority access to a new NextGeneration DNA Sequencing Facility to enable faster, less expensive and more accurate diagnoses of mitochondrial disease.

The AMDF directs funds to patient support services, including a telephone helpline and website, support groups and information sessions.

The Bloody Long Walk 2016 series started in Adelaide on 21 August, then moved onto Sydney’s North on 4 September, followed by Perth (25 September), Brisbane (2 October), Melbourne (23 October), Canberra (30 October) with a final stop in Sydney’s East (13 November)

 

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