Six people, including a Catholic school Principal, presented the Prime Minister, Tony Abbott, with a T-shirt when they arrived in Canberra after a 320 kilometre walk to raise research funds into a fatal disease.
Starting in Newcastle on 1 May, the Save Our Sons walkers were led by founder Elie Eid pushing his son Emilio, who has DMD (Duchenne Muscular Dystrophy), in a wheelchair on the 320-kilometre walk from Sydney to Parliament House.
Mr Eid said he asked Mr Abbott to match dollar for dollar in raising $2 million to help fund human clinical trials in Australia into a treatment for the disease. Human clinical trials take 18 months to two years to complete.
He said trials in the U.K. have so far proved promising with the use of a synthetic steroid showing it may stop the condition from worsening and does not have the side effects of steroids currently used.
“There are also a number of muscular dystrophies that affect adults too and the results may have a benefit for everyone,” Mr Eid said.
The 12-day walk raised over $123,000 to help find a cure for DMD (Duchenne Muscular Dystrophy) – a muscular wasting disease for which there is no cure. It afflicts mostly boys.
The disease is a fatal form of muscular dystrophy characterised by aggressive muscle degeneration that leads to an inability to walk and eventually death.
The Principal of the Emilio’s former school, Antonella Dolores, from St Johns Catholic Primary School Auburn, took two weeks leave from her duties to take part in the walk.
Save Our Sons was founded in 2008 and Mr Eid and his team have already raised $3.5 million to help fund clinical trials in the UK and USA.
His son, Emilio, who is ten years old, was diagnosed with the disease just before the age of 2.
The walk started in Newcastle with James Reid and a team of runners from Run Reid pushing an empty wheelchair to Sydney.
Facts about DMD (Duchenne Muscular Dystrophy):
- It is the number one genetic killer of young boys in the world
- Over 1,000 young boys have the disease in Australia today
- Of the children afflicted, 99 per cent are boys.