Resources
Mckell Report
Save Our Sons commissioned the McKell Institute and Equity Economics to produce a keynote Report highlighting the main issues and challenges facing families of children and adults with Duchenne and Becker Muscular Dystrophy in Australia as they wait for a cure.
The Report helps to better understand how Duchenne and Becker impacts families, how we can ensure that new treatments benefit Australian’s sooner, and to better support those with the conditions today.
Emergency Care Card
This simple card for your wallet or purse will help you talk to doctors and nurses about the special precautions required if a child with Duchenne suddenly becomes sick or injured.
Newly Diagnosed Pack
This booklet is produced by Save Our Sons
Duchenne Foundation; the National Australian not for-profit organisation supporting boys, young men, rare girls and their families living with Duchenne and
Becker muscular dystrophy.
The information contained in this booklet is an overview of Duchenne muscular dystrophy, and is designed to guide you through the early days of diagnosis - the start of your family’s journey.
Teachers’ Resource Pack
Starting school, transitioning into high school and graduating to further education are all changes that children, regardless of whether they have a disability or not, experience. These are ‘normal’ milestones that are celebrated but also approached with apprehension for both children and their parents. Save Our Sons has developed this educational
resource to help teachers, educational assistants and other multi-disciplinary team members to better.
A Guide for NDIS Planning
Save Our Sons Duchenne Foundation commissioned Marguerite Botha, an experienced NDIS Support Coordinator, to write a National Disability Insurance Scheme (NDIS) Information Guide specifically catered to families and individuals living with Duchenne (DMD) and Becker (BMD) Muscular Dystrophies.
A Guide to Duchenne Muscular Dystrophy
Save Our Sons Duchenne Foundation commissioned Marguerite Botha, an experienced NDIS Support Coordinator, to write a National Disability Insurance Scheme (NDIS) Information Guide specifically catered to families and individuals living with Duchenne (DMD) and Becker (BMD) Muscular Dystrophies.
Jons Journey Inside the Body
This first comic has Jon and Captain Jack going on a special adventure, exploring the inside of Jon’s muscle cells. The journey also explores in very simple terms how genes contribute to DMD. This is a great first book explaining why someone has DMD
Mission Duchenne - Don in the Spaceship
Jon and Captain Jack travel into the future to look at how DMD will impact Jon in the future, looking at both the physical and psychological impacts of the condition.
Mission Duchenne - A Time of Change
Jon and Captain Jack explore puberty and DMD as well as the extra challenges faced in the early teenage years.
Mission Duchenne - The New Commander
The last adventure takes Jon and Captain Jack on a quest to explore the aspects of transition from a child to an adult. The main focus of this book is on Jon taking charge of his care with the support of his care team and support network.
Pegaso-A-Cough® IPV Information Webinar Recording
This Webinar will provide an introduction to Intrapulmonary Percussive Ventilation (IPV) specifically using the Pegaso-A-Cough® device. It discuss its role in Airway Clearance in the context of proximal (upper airway, cough clearance) and peripheral (lower lung secretion) clearance. Its mechanism of action in providing breathing support while mobilising secretions will be explained.
Gene Therapy pipeline for Duchenne muscular dystrophy from an Australian perspective
On Thursday 29 August 2024, Save Our Sons Duchenne Foundation hosted a webinar that discusses the gene therapy pipeline for Duchenne muscular dystrophy from an Australian perspective.The webinar discussed how clinicians across Australia are working together to support equitable approaches for clinical trial patient recruitment.Presenters included, Dr Ian Woodcock from the Royal Children's Hospital, Melbourne, andDr Michelle Lorentzos from the Sydney Children's Hospitals Network.