The Save Our Sons Duchenne Foundation is raising funds for the fight against Duchenne
The fight is on to find a cure for a fatal muscle-wasting condition that mainly affects boys.
What is Duchenne muscular dystrophy?
Duchenne muscular dystrophy is a severe muscle-wasting condition that affects 1 in 3500 boys, and in rare cases, girls. Once diagnosed, children are normally confined to a wheelchair between the ages of seven and 12, and most do not live past their early to mid-20s.
Duchenne currently has no cure and a 100 per cent mortality rate.
What causes Duchenne muscular dystrophy?
Duchenne is caused by a fault in a gene, which produces a protein called dystrophin. This genetic fault is often referred to as a mutation. As a result, very little or no dystrophin protein is produced. Dystrophin protein is needed to protect muscle cells from damage and without it the muscle cells deteriorate and the symptoms of Duchenne muscular dystrophy develop.
What are the symptoms?
Symptoms of Duchenne usually appear between ages two and five and may include difficulty running, jumping, climbing and rising from the floor. Those with the condition are subject to frequent falls, enlarged calf muscles, toe walking and delays in language development.
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), but also the muscles used for breathing (the lungs and diaphragm) and the heart.
What you can do
For the third consecutive year, Chemist Warehouse is the national partner of the Walk to Save Our Sons.
From March 1-7, a group of volunteer walkers will walk through Sydney, some pushing wheelchairs with their sons or boys affected by Duchenne, as part of a major fundraiser.
For more information about the walk and how you can get involved, visit saveoursons.org.au
Where the fundraising goes
Funds raised by Save Our Sons Duchenne Foundation will be invested in three vital areas:
Potentially life-saving research
Since 2008, the Save Our Sons Duchenne Foundation has assisted in the funding of potentially life-saving research around the world, including in the US, Canada and the UK.
The research includes promoting healthy muscle fibre regeneration, developing a muscle-boosting gene therapy for Duchenne, developing a synthetic steroid to reduce side effects seen in current steroid therapy, nutritional therapies to enhance walking ability for those with Duchenne, the substitution of missing dystrophin protein and the delivery of the dystrophin gene to the muscles.
Expansion of Duchenne nurses program
The Save Our Sons Duchenne Foundation has helped fund five specially trained neuromuscular nurses in major children’s clinics nationwide to ensure that every family impacted by Duchenne is supported while navigating the complicated Duchenne journey and has access to the best care and potential clinical trials.
The clinics to date are at the Murdoch Children’s Research Institute, in association with The Royal Children’s Hospital Melbourne; The Children’s Hospital at Westmead, Sydney; the Lady Cilento Children’s Hospital, in Brisbane; and the Perth Children’s Hospital in WA; with the Women’s and Children’s Hospital in Adelaide, to follow this year.
Equipment purchase to help improve life quality
Fundraising money is also used to help fund essential quality of life equipment that is currently unavailable, or not fully funded under state or federal government funding schemes. This equipment includes cough-assist machines, breathing machines (sip and puff mouthpiece ventilation), swim scooters, mobility scooters and stand-up wheelchairs.
For more information about Save Our Sons, visit saveoursons.org.au
Walk to Save Our Sons 2017: Raising funds in the fight against Duchenne