Announcement posted by Mito Foundation 21 May 2022
Spokespeople including local families affected by mito are available for pre-recorded or live interviews.
Mitochondrial disease (mito) is a debilitating, potentially fatal genetic disorder that robs the body’s cells of the energy they need to function properly. There are no cures and few effective treatments.
Participants will walk for more than 7 hours, clock up nearly 47,000 steps, all the way from Yarra Bend Park to St Kilda Sea Baths.
And this year, walkers will have an extra spring in their step following the recent passing of the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 through the Senate on 30 March.
The passing of this legislation will allow Australian families with certain forms of mito to access mitochondrial donation, an IVF technique, to have healthy children of their own.
Mito Foundation CEO, Sean Murray, said the event is part of a nationwide initiative which supports families affected by mito.
“So far, the response has been unbelievable for our Melbourne event, which is one of the 10 Bloody Long Walks taking place across Australia this year,” Mr. Murray said.
“The truth is every week in Australia one child will develop a life-threatening form of mito – that’s 50 Aussie kids a year. Yet most people have no idea that the disease exists.
“All money raised will help ramp up our support services for mito families, while funding vital research into prevention, treatments and cures.
Kat Barlow, mother of 12-year-old Noah, who suffers from mito, spoke about the challenges of having a child who battles the disease.
“Our darling Noah is our miracle child. He was born prematurely at just 29 weeks and as he grew up, he faced significant health challenges. My husband and I spent years trying to find answers and it wasn’t until Noah was five years old that the doctors thought it was most likely mito and it wasn’t until he was 8 that we got a diagnosis.
“As a parent, nothing can prepare you for this news, but we have the most incredible medical team around us now and despite the daily challenges Noah faces, he manages to smile every day.
“The money raised goes toward important research and support for families who have kids suffering from this rare disease, and we are so grateful to everyone that takes part.”
For more information about The Bloody Long Walk, to register, share your support, or contribute a donation, please go to: www.bloodylongwalk.com.au.
Media contact: Bas Bolyn 0447 486 195