Your participation and support was much appreciated and noticed, your stirring speech much admired and discussed, and your genuine commitment and passion in helping the Duchenne and Becker muscular dystrophy community in Australia much lauded and respected.The feedback from families and supporters has been overwhelmingly positive.Your contribution, support and friendship is highly valued. Heartfelt gratitude, on behalf of the Duchenne and Becker community in Australia, to you and the wonderful USU.
On Sunday 23rd February over 200 people participated in the NSW Community Walk 4 Duchenne, which was created to allow families, friends and members of the community to take part in a 7.9km walk around the Cooks River in Earlwood in order to raise awareness of Duchenne muscular dystrophy (DMD).
Immediately following the Walk, more than 1000 people attended the Sonday Funday event involving food, fun and activities for the entire family. The community are at the heart of everything that Save Our Sons do.
There is no cure or effective treatments available in Australia to change the natural trajectory of Duchenne but the events helped to raise vital funds for trials to ultimately find a cure as well as providing essential equipment and services to enhance quality of life.
Participants included Chris Bowen MP, the Federal Shadow Minister for Health, Mike Freelander MP, the Federal Member for Macarthur and the Deputy-Chair of the Commonwealth Parliament Standing Committee on Health, Senator Deborah O’Neill, Sophie Cotsis MP, the State Member for Canterbury, Jihad Dib MP, the State Member for Lakemba, Councillor Clare Raffan, and Graeme Kelly OAM, the General Secretary of the United Services Union with all of their Executive.
Campsie local and founder of Save Our Sons Duchenne Foundation, Elie Eid, whose son is diagnosed with DMD, said “the Walk symbolises the long and tough journey that families have to endure when they have a child with Duchenne. It also represents our solidarity with those kids that can no longer walk or are no longer with us today.”
Save Our Sons was founded in 2008 and is now the peak body for those living with Duchenne and Becker muscular dystrophy across Australia.
The Save Our Sons Vision is to find a cure for Duchenne and Becker muscular dystrophy.
Duchenne is an X-linked genetic condition that affects 1 in 3500 boys and in very rare cases 1 in 50 million girls.
Duchenne affects every muscle through multi-systems in the body including the pelvic girdle, legs, arms, neck, hands, through to the smooth muscle affecting swallowing, digestion and elimination. The heart, lungs and diaphragm are also muscles, and the deterioration of these organs leads to progressive and inevitable respiratory and heart failure.
Life expectancy is in the teens-to-mid-20’s with young affected Australians passing away as young as 10 years of age from cardiac and respiratory failure.
Funds raised by Save Our Sons goes directly towards funding research and clinical trials, improving care, funding nurses and providing quality of life enhancing equipment. Save Our Sons aim to make a difference in the lives of all living with Duchenne and Becker muscular dystrophy across Australia.
Save Our Sons also helps families afford essential quality-of-life enhancing equipment, not currently available under State or Federal Government funding schemes, including funds for:
- Top-up funding for standing function wheelchairs
- Cough-assist machines
- Portable ventilators
- Swim scooters, and
- Mobility scooters.
Funds raised also go directly towards the provision of Nurses focusing on Duchenne and Becker muscular dystrophy in hospitals across Australia, the Australian Duchenne Registry, the Duchenne Network Australia, and research, studies and clinical trials which are of the utmost importance in finding a cure for Duchenne and Becker muscular dystrophy. Securing more clinical trials to be undertaken in Australia and for as many Australians as possible to participate in those clinical trials surrounded by their support networks is a key objective of Save Our Sons.
For more information go to www.saveoursons.org.au
Links to social media posts regarding the NSW Community Walk 4 Duchenne and Sonday Funday:
https://m.facebook.com/story.php?story_fbid=1830843360382341&id=784441001689254&__tn__=%2As%2As-R
https://m.facebook.com/SophieCotsis/photos/a.726884657330340/3053809987971117/?type=3
https://www.instagram.com/p/B85kx3iB92r/?hl=en
https://m.facebook.com/story.php?story_fbid=3031584980185101&id=131006166909678&__tn__=%2As%2As-R
https://mobile.twitter.com/jihaddibmp/status/1231382706811883520
