Save Our Sons Duchenne Foundation has marked their 10th anniversary by announcing their newest program in the fight for a cure – Duchenne Network Australia. A cheque for a staggering $1,365,000, was presented to Associate Professor Kristi Jones from the Institute Neuromuscular Research (INMR) in Sydney at the Save Our Sons Gala held at the ICC on Saturday night (23 June).
More than 1200 people attended the gala and witnessed and applauded the announcement that will secure the network for three years to work on developing the blueprint for Duchenne trials in Australia.
Affecting one in 3500 newborn boys (and girls in very rare cases), Duchenne causes progressive loss of muscle function with most boys losing the ability to walk by their teens and death occurring in early adulthood. Approximately 30 boys are diagnosed with Duchenne annually in Australia, and between 600 and 900 Australian families currently live with the condition.
The funding is possible due to the success of the 2018 Walk To Save Our Sons, and the generous support of National Partner Chemist Warehouse.
The Duchenne Network Australia will fund positions for Neuromuscular Specialist Fellows, physiotherapist evaluators, clinical trial nurses, and a genetic counselor to run The Duchenne Registry Australia. This will develop a closer collaboration between hospitals and better communication with industry and researchers wanting to bring clinical trials to Australia.
Executive Officer of Clinical and Advocacy Klair Bayley said: “This is the biggest step ever taken in securing the future of clinical trials for Duchenne in Australia. We have been overlooked for many years due to the lack of clinical trial capacity, and the data necessary to plan trials. We have some of the world’s leading clinicians specialising in Duchenne who have dedicated their careers to our community, but providing care had to take priority over the clinical trials due to the lack of infrastructure. Not anymore.”
Duchenne research is at an unprecedented stage in terms of the number trials and the number of possible therapeutic approaches entering trials. Pharmaceutical companies can be reluctant to go to new clinical trial sites, especially those with limited trial experience.
“We have seen this already in Australia which has led to bottlenecks at our existing experienced sites which are reaching capacity,” said Save Our Sons Duchenne Foundation Research Affairs Manager Dr Kristina Elvidge.
“We will now be able to support more clinical sites to be ready to run trials by funding positions, provide support to develop clinical trial skills and a centralised patient registry at the heart of Duchenne Network Australia.”
Associate Professor Kristi Jones, who accepted the cheque, will lead the Duchenne Network Australia alongside Professor Monique Ryan From the Murdoch Childrens Research Institute (MCRI) and Royal Childrens Hospital in Melbourne.
“Now when I give a family the news that their child has Duchenne, and they ask where in the world they need to take their child to access the best care and treatments, I can confidently say you do not need to go anywhere else, Australia has everything your child needs,” said Associate Professor Kristi Jones.
Professor Monique Ryan supported the launch of the network by saying that: “We want to be able to engage with every promising trial of every promising new treatment for those with Duchenne, but this takes time and hard work, we are so grateful for this extremely generous support.”
Save Our Sons Duchenne Foundation has put Australia well and truly on the word map for Duchenne clinical trials with this monumental commitment to the Duchenne Network Australia.
Save Our Sons Duchenne Foundation was founded in 2008 by Elie Eid, following the diagnosis of his son Emilio with Duchenne, and is the peak body for those living with Duchenne muscular dystrophy and Becker muscular dystrophy across Australia.
“This is a landmark announcement for the Duchenne community and would not have been possible without the support of our National Partner Chemist Warehouse, our sponsors, supporters and donors. There is no time to waste for those with Duchenne and their families,” said Save Our Sons Duchenne Foundation Founder and CEO Elie Eid.
Since its inception the Save Our Sons team has raised in excess of $12,000,000 which has funded research, clinical trials, a nurse’s program, a patient registry and quality of life enhancing equipment.
Save Our Sons Duchenne Foundation 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.