Macarthur MP meets fundraising walkers in Canberra after seven-day trek

A group of dedicated walkers in bright yellow made their way from Sydney to Canberra this week for the gruelling Walk 4 Duchenne.

The event is a fundraiser for Save Our Sons Duchenne Foundation, an organisation which supports the roughly 1000 Australians who live with Duchenne and Becker muscular dystrophy, and saw the group travel from head office in Sydney to Parliament House in Canberra.

There, they were met by Macarthur MP Dr Michael Freelander, and a handful of other politicians.

Duchenne muscular dystrophy is the most common muscle disease of childhood, Save Our Sons reports, affecting about one in every 3500 newborn boys (it affects roughly one in 50 million girls).

"Symptoms of Duchenne usually appear between ages two and five years and may include difficulty: running, jumping, climbing, and rising from the floor, frequent falls, enlarged calf muscles, toe walking and delays in language development," Save Our Sons' website reports.

"The first muscles affected are those around the hips and upper thigh. Weakness gradually progresses to include all the muscles used for movement (skeletal muscles), the muscles used for breathing and the heart."

Becker muscular dystrophy however might not show symptoms until age five. It is caused by an "insufficient amount of the protein called dystrophin in the muscle cell, which cases the muscle to break down over time", Save Our Sons reports.

It occurs in somewhere between one in 18,000 and one in 30,000 newborn boys.

Dr Freelander said he was honoured to meet with the walkers at the end of their journey, which was hampered by Sydney's flood-inducing wet weather.

"It was my pleasure to welcome the Save Our Sons Duchenne Foundation to Parliament this morning, alongside Mark Butler, Chris Bowen and Linda Burney," he wrote on Facebook on Wednesday.

"Duchenne and Becker muscular dystrophy are heartbreaking diseases of childhood that lead to severe disability and death.

"Genetically determined, at this stage there is no cure but with advancements in genetic technologies there is much hope for the future.

"We must progress quickly and that means in research, clinical trials and new technologies."

The Walk 4 Duchenne, supported along the way by Chemist Warehouse, managed to get their overall fundraising total to more than $150,000.

Representatives of the walking party and families of young people in the Duchenne and Becker muscular dystrophy community met with federal health minister Greg Hunt and other MPs in the afternoon.

They came with a key message: cut out the red tape stifling the approval process of key treatments and trials.

"Duchenne is like a ticking time bomb and our community simply cannot afford to be waiting around while the TGA (Therapeutic Goods Administration) gives the tick to drugs and therapies which have already been approved in credible international jurisdictions like the FDA (US Food and Drug Administration)," Save Our Sons founder Elie Eid - father of a boy with Duchenne - said.

"With each passing day, this condition gets to a point where it is simply beyond repair. Our boys end up in wheelchairs and sadly will meet untimely and premature deaths usually in their teens and early 20s.

"The Government must do more to bring potentially life-enhancing drugs and therapies to this country. More effort must also go into ensuring that families from our community, irrespective of their residence, are able to participate in clinical trials especially with gene therapy just around the corner."

Donations are still being accepted until March 31 at saveoursons.org.au.

This story Macarthur MP meets fundraising walkers in Canberra after seven-day trek first appeared on Campbelltown-Macarthur Advertiser.