Melbourne's Bloody Long Walk to beat mito

Residents from across Melbourne and surrounds will walk 35km this Sunday 19 May to raise funds for Mito Foundation.

Sunday marks the latest installment of The Bloody Long Walk in Melbourne, kicking off at 7am at Yarra Bend Park, Fairfield, through the beautiful Melbourne Parklands, along the Yarra past Docklands and Southbank, and then to Port Phillip Bay to St Kilda Beach.  

Mitochondrial disease (mito) is a debilitating, potentially fatal, genetic disorder that robs the body's cells of the energy they need to function properly. 

Over 2,600 participants will walk for more than 7 hours, clocking up nearly 47,000 steps to raise funds and awareness for the Mito Foundation and its goal to end mito. Individuals and teams have already raised $302,000 for the cause.

Among the walkers will be Team Maeve, a team led by Kerrie Vrana whose granddaughter Maeve has mito. 

"When Maeve was 18 months old, she was diagnosed with Leigh's Syndrome, a type of mito. As a family, we were devastated," Kerrie said. "We were introduced to the Mito Foundation. The work they do in raising awareness, supporting families and most importantly striving for a cure means a lot to us, and many other people in the same situation. Since then, we have become involved with The Bloody Long Walk."  

Kerrie also sells handmade cookies at a local market and donates her sales to the Mito Foundation.

"We are so grateful to our family, friends, and community. They continue supporting us by raising awareness and funds."

"Maeve's amazing courage and strength have brought her so far. She is now 8 years old; we didn't think this was possible a few years ago. Although she can't talk, her communication skills are amazing and heart-warming. A hug from her speaks volumes." 

Mito Foundation CEO Sean Murray said the event is part of a nationwide initiative supporting families affected by mito.  

"Maeve's story is one of many, as families across Australia face the harsh impact of mito. The reality is that around 70 Aussie kids born in the next year will develop a life-threatening form of mito — that's one baby born every 6 days. Sadly, most children diagnosed with mito die in the first 5 years of life." Mr Murray said. 

"Scientific advancements are the most promising they've ever been. Researchers are collaborating to develop treatments, with more clinical trials underway than ever before. These could significantly improve outcomes for people diagnosed with mito.

More than 120,000 Australians have genetic changes that put them at risk of developing mito or passing it on to their children.  

For more information about The Bloody Long Walk visit: bloodylongwalk.com.au/melbourne/  

Media contact: Mito Foundation Marketing and Communication Team | communications@mito.org.au | 02 8033 4113 

Media are encouraged to get in touch to arrange to film and/or conduct interviews at the event. 

*** Media Note *** 
Starting address: Yarra Bend Park, Fairfield (off Deep Rock Road)
Finish: St Kilda Beach Sea Baths
Event date: Sunday, 19 May 2024 
Start time: From 7am 

A course map can be found here: https://www.bloodylongwalk.com.au/melbourne/course/ 

ABOUT MITO FOUNDATION
Mito Foundation supports people affected by mitochondrial disease (mito), funds essential research into the prevention, diagnosis, treatment and cures of mitochondrial disorders, and increases awareness and education about this devastating disease. 

ABOUT MITOCHONDRIAL DISEASE
Mitochondrial disease is a group of genetic disorders that affect mitochondria which are responsible for producing energy in cells. Mitochondria are responsible for creating more than 90% of the energy needed to sustain life and support growth. ln mito, mitochondria cannot efficiently turn sugar and oxygen into energy, which can cause cells to malfunction. This can cause disruption to one or more body organs, potentially leading to organ failure. The disease is debilitating and often terminal. 

Mitochondrial disease affects one in 4,300 people. There are no cures and few effective treatments. 

Mitochondrial disorders are the most common group of inherited metabolic disorders. There are currently more than 350 different types of mito that have been identified through genetic testing. It is highly complex and can affect anyone at any age.

One child will develop a life-threatening form of mitochondrial disease every week in Australia, which is around 70 kids a year. Most Australian children diagnosed with mitochondrial disease die in the first 5 years of their life. 

One in 200 people, or more than 120,000 Australians, have genetic changes that put them at risk of developing mitochondrial disease. We do not yet know how many of these people are symptomatic but undiagnosed or misdiagnosed. They may be experiencing symptoms including dementia (including childhood dementia), diabetes, deafness or seizures during their lifetimes. Some are not yet symptomatic, and some are unknowingly at risk of passing the disease on to their children.

Mitochondrial disease can cause any symptom in any organ at any age.