Placing a Clinical Neuromuscular Nurse in five of the major Children's hospitals across the country, Save Our Sons Duchenne Foundation has changed the landscape for Duchenne muscular dystrophy and is providing specialist clinical care to help change young lives, and help in the fight against Duchenne.
Save Our Sons Executive Officer of Clinical Care and Advocacy, Klair Bayley said: "Nurses are at the heart of our children's healthcare, from diagnosis and through the journey to adulthood. By having nurses trained specifically to care for our community is imperative in changing lives now and into the future."
Supported by national partner Chemist Warehouse, Save Our Sons is committed to finding a cure for Duchenne – a genetic condition causing muscle weakness and wasting, and the most common form of muscular dystrophy in children.
Duchenne affects one in 3500 newborn boys (and girls in rare cases), the progressive condition eventually affects all voluntary muscles, the heart and breathing muscles, and typically confines children to a wheelchair by their early-teens and sadly, most do not live past their twenties.
Save Our Sons identified that one of the key barriers to bringing Duchenne clinical trials to Australia was the nationally under-resourced neuromuscular clinics. Busy hospitals across the nation could not allocate sufficient staff to facilitate the trials while still providing 'Gold Standard', 'Best Practice' clinical care for those with Duchenne.
"Save Our Sons began developing our national nurses program more than two years ago, to specifically address this key barrier. Australian medical and research staff need the support of our nurses program to facilitate Australian-based Duchenne clinical trials" said Klair Bayley.
To date a nurse has been funded at The Children's Hospital Westmead, Murdoch Children's Research Institute / Royal Children's Hospital Melbourne, Perth Children's Hospital and two more nurses scheduled to commence their role at Lady Cilento Children's Hospital Brisbane and Women's and Children's Hospital, Adelaide. The cost of this program is $371,000 per year and for the initial three-year program will cost in excess of $1.1 million.
The nurses will coordinate care so that families only need to visit the clinic once to see all of the specialists needed for optimal care and make sure all check-ups are scheduled at the recommended intervals.
With knowledge of each patient's history, the nurses will also offer significant support to families navigating the complicated and overwhelming journey of caring for a child, or children with Duchenne.
Save Our Sons was founded in 2008 by Elie Eid, a former Sydney train-driver and father to Emilio who was diagnosed with Duchenne. Save Our Sons Duchenne Foundation has raised more than AUD $10 million since its inception and receives no government funding, relying purely on the generosity of its supporters via fundraising initiatives to help fund research and clinical trials, provide equipment that helps enhance the quality of life of those living with Duchenne. and support the nurses program.
"To families like mine, nurses are heroes. By ensuring families can access a nurse who works specifically with Duchenne, we'd be giving our kids the best chance for involvement in clinical trials and the level of care they need and deserve," said Elie Eid, Save Our Sons Founder.
"For the price of a cup of coffee each week - $5, that's just $260 over a year, we can sustain the nurses program into the future," added Elie Eid.
For further information, to get involved and to donate to the Nurses Program, please visit: saveoursons.org.au.
Question: What is Save Our Sons Duchenne Foundation?
Klair Bayley: We are the peak body not for profit charity for those living with Duchenne muscular dystrophy across Australia. Save Our Sons is committed to finding a cure for Duchenne – a genetic condition causing muscle weakness and wasting, and is the most common form of muscular dystrophy in children.
Duchenne affects one in 3500 boys (and girls in rare cases). About 50 boys are diagnosed with Duchenne annually in Australia, and there are between 600 and 900 Australians currently living with the condition.
Question: What inspired the creation of Save Our Sons Duchenne Foundation?
Klair Bayley: Save Our Sons was founded in 2008 by Elie Eid, a former Sydney train-driver and father to Emilio who was diagnosed with Duchenne. Save Our Sons Duchenne Foundation has raised more than AUD $10 million since its inception and receives no government funding, relying purely on the generosity of its supporters via fundraising initiatives to help fund research and clinical trials, provide equipment that helps enhance the quality of life of those living with Duchenne. and support the nurses program.
Question: Can you tell us about how you implanted a Clinical Neuromuscular Nurse in five of the major Children's hospitals across the country?
Klair Bayley: Australian medical and research staff needed the support of our nurses program to facilitate Australian-based Duchenne clinical trials.
The Save Our Sons Duchenne Foundation nurses program was developed to ensure -Best Practice' clinical care for all with Duchenne and to support bringing clinical trials to Australia. In order to achieve this, in partnership with the clinical and research experts across Australia, we have highlighted and addressed where the deficits currently lie, and by funding neuromuscular clinical nurse specialist positions, in five of the main paediatric tertiary hospitals across Australia, we could directly ensure that the clinical care and clinical trial capacity could be improved. And so the nurses program launched in July 2016.
It's important to note that in other countries families have access to a wide range of clinical trials but in Australia, there are very few. Our mission is to bring more of these trials to Australia and in doing so, bring hope to our community.
Question: Where are these five hospitals?
Klair Bayley: The Children's Hospital Westmead - Sydney
Murdoch Children's Research Institute / Royal Children's Hospital Melbourne - Melbourne
Perth Children's Hospital
Lady Cillento Children's Hospital - Brisbane
Women's' and Children's Hospital - Adelaide
Question: How does Save Our Sons Duchenne Foundation train nurses in Duchenne?
Klair Bayley: Save Our Sons Duchenne Foundation support the professional development of our nurses and this year supported them to travel to the international clinicians conference in Florida. We also hold our own International conferences that offer training and facilitate the nurses network for Duchenne. It is important that the nurses are able to connect and network with each other across Australia.
Question: Are you able to talk us through a case study of a nurse helping a family?
Klair Bayley: The nurses provide significant support as families navigate the complicated and difficult journey of caring for a child with Duchenne.
Our nurses help families from the time of diagnosis through the Duchenne Journey, offering support and guidance, coordinating and scheduling appointments as well as importantly facilitating clinical trials.
Question: What do Save Our Sons hope to achieve, this year?
Klair Bayley: We hope to achieve our mission:
To find a cure for Duchenne. We strive to achieve this by funding research and clinical trials, improving care, funding nurses and providing quality of life enhancing equipment. We aim to make a difference in the lives of all living with Duchenne across Australia.
We will also be funding further clinical trial capacity programs in mid-2018.
Question: How can Australians support the Save Our Sons Duchenne Foundation?
Klair Bayley: Regular giving is key to the sustainability of the program in to the future. Just $5 a week, the price of a cup of coffee will make a huge impact to the program. Please donate and support. Help Us Help Them. Head to www.saveoursons.org.au/donations/duchenne-nurses-program/
Interview by Brooke Hunter