Sydney's Northern Beaches Bloody Long Walk to Beat Mito

Editor's note: Mito Foundation CEO, Sean Murray, is available for pre-recorded or live interviews.

Residents from across Sydney's Northern Beaches and surrounds will walk 35km on Sunday 4 August to raise funds for the Mito Foundation.  
 

Setting off at 6:30am from Palm Beach, The Bloody Long Walk participants will walk for over 7 hours along the coastline, before finishing at Manly Promenade.

Over 1,800 participants will clock up nearly 47,000 steps each to raise funds and awareness for Mito Foundation and its goal to end mitochondrial disease (mito). Mito is a debilitating, potentially fatal, genetic disorder that robs the body's cells of the energy they need to function properly.

Individuals and teams will aim to raise over $330,000 for the cause. 
Margie and Doug Lingard from Mona Vale are walking their ninth Bloody Long Walk in memory of their daughter Rose who died from mito in 2017.

Her death followed that of her brother Alex more than 30 years earlier to "an unknown illness.''

"After a phone call to one of Alex's neurologists we were told that he had most likely died from a mitochondrial disease. It was the first time we had heard the word, and when we Googled it our hearts sank … an incurable illness for which there wasn't even any treatment", Margie Lingard says.

"It broke our hearts to see her struggling but it's also what motivated us then to find a cure for Rose, and still motivates us to find a cure for every other sufferer."

So far the team has already raised more than $13,000.

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

"The Lingard'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 and could significantly improve outcomes for people diagnosed with mito.

Our ambition is to prevent as many children as possible from suffering from this life-threatening disease and to reduce the burden of mito on families and the community."

For more information about The Bloody Long Walk visit: https://www.bloodylongwalk.com.au/sydney-north/
 

*** Media Note ***

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

Start: Governor Phillip Park, Palm Beach
Finish: Manly Promenade
Event date: Sunday,4 August 2024
Start time: From 6:30am

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.