The fight is on find a cure for a fatal muscle-wasting condition that mainly affects boys.
What is Duchenne muscular dystrophy?
Duchenne muscular dystrophy may be a severe muscle-wasting condition that affects One in 3500 boys, plus rare cases, girls. Once diagnosed, students are normally restricted to a wheelchair between seven and 12, and the most do not live past their early to mid-20s.
Duchenne currently doesn’t have a cure including a 100 per cent mortality rate.
What causes Duchenne muscular dystrophy?
Duchenne is the effect of a fault from a gene, which produces a protein called dystrophin. This genetic fault is frequently referred to as a mutation. Thus, very little or no dystrophin protein is produced. Dystrophin proteins are needed to protect muscle tissues from damage and who have’nt experienced it the muscle cells deteriorate and also the symptoms of Duchenne muscular dystrophy develop.
What are classified as the symptoms?
Symptoms of Duchenne usually appear between ages two and five which enables it to include difficulty running, jumping, climbing and rising from the floor. Those that have the condition are governed by frequent falls, enlarged lower legs, toe walking and delays in language development.
The first muscles affected are they around the hips and upper thigh. Weakness gradually progresses include things like all the muscles used by movement (skeletal muscles), but also the muscles for breathing (the lungs and diaphragm) plus the heart.
What you’re able to do
For the third consecutive year, Chemist Warehouse stands out as the national partner with the Walk in order to save Our Sons.
From March 1-7, several grouped volunteer walkers will walk-through Sydney, some pushing wheelchairs by their sons or boys affected by Duchenne, as part of a significant fundraiser.
For much more information about the walk and exactly how you can get involved, visit saveoursons.org.au
Where the fundraising goes
Funds raised by Save Our Sons Duchenne Foundation will undoubtedly 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 across the world, including in america, Canada and also UK.
The research includes promoting healthy muscle fibre regeneration, developing a muscle-boosting gene therapy for Duchenne, working with a synthetic steroid to lessen side effects associated with current steroid therapy, nutritional therapies to raise walking ability for the people with Duchenne, the substitution of missing dystrophin protein together with the delivery of the dystrophin gene towards the muscles.
Expansion of Duchenne nurses program
The Save Our Sons Duchenne Foundation has helped fund five specially trained neuromuscular nurses in primary children’s clinics nationwide so every family tormented by Duchenne is supported while navigating the complicated Duchenne journey and possesses access to the best care and potential numerous studies.
The clinics to go out with are at the Murdoch Children’s Research Institute, in colaboration with The Royal Children’s Hospital Melbourne; The Children’s Hospital at Westmead, Sydney; your woman Cilento Children’s Hospital, in Brisbane; as well as Perth Children’s Hospital in WA; while using the Women’s and Children’s Hospital in Adelaide, to adhere to this year.
Equipment purchase that will improve life quality
Fundraising budget is also which is used to help fund essential life quality equipment that could be currently unavailable, or not fully funded under federal or state 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 addiitional information about Save Our Sons, visit saveoursons.org.au
Walk to store Our Sons 2019: Raising funds during the fight against Duchenne
