Walk 4 Duchenne Takes Its Message Directly to Parliament
22nd March 2021
After days of walking from Sydney to Canberra through torrential rain, high winds and fierce storms, a group of brave walkers from the Save Our Sons Duchenne Foundation will finally be arriving at Parliament House on Wednesday morning. These walkers have not only been raising community awareness and funding for the life destroying disease of Duchenne and Becker muscular dystrophy but are bringing six key messages to politicians from all sides of the political spectrum.
Key amongst these messages is the need for the Federal Government to loosen up the bureaucracy and red tape which is currently stifling the approval process of key treatments and medicines for boys subject to this muscle wasting disease. A further, message concerns the need for newborn screening and increased hospital infrastructure spending to ensure gene therapy trials are able take place in several of our hospitals later this year.
A delegation of Save our Sons will be meeting with both the Minister for Health and Shadow Minister for Health plus a number of other key politicians while they are in Canberra. Family representatives and boys with Duchenne will be amongst those community members who will be present.
“Duchenne is like a ticking time bomb and our community simply cannot afford to be waiting around while the TGA gives the tick to drugs and therapies which have already been approved in credible international jurisdictions like the FDA” says Elie Eid, Founder of Save Our Sons, and father of a boy with Duchenne.
“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 20’s”
“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 and irrespective of their residence, are able to participate in clinical trials especially with gene therapy just around the corner”.
“We will be delivering 6 key messages while we are in Canberra and we will be seeking bipartisan political support and effort to make sure we kick this wretched disease to the kerb” concluded Mr Eid.
For more information on the 2021 Walk for Duchenne and the 6 Key messages for our politicians please contact:
Elie Eid, Founder on 0410 902 343 or
Lance Dale, Advocacy Officer on 0466 899 587