Save Our Sons Duchenne Foundation provides information and resources for families living with Duchenne. Sharing this knowledge with families gives them the power to get the most out of life.
New Diagnosis Pack
The first few days, weeks and months after a diagnosis of Duchenne can be overwhelming and distressing. This pack gives you reliable information to help guide you at the beginning of your Duchenne journey and reassure you that you are not alone.
The pack contains:
- New Diagnosis Booklet - What Do We Do Now?
- Emergency 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.
- Carers Australia counselling information
- A copy of the children’s book ‘That's What Wings Are For’. A beautiful story about Bluey the dragon who is a bit different, but is strong and amazing in so many other ways. This story was written by Patrick Guest - a physiotherapist with a passion to make people feel better inside and out. Pat lives in Victoria and has first-hand experience with Duchenne. One of his three children has Duchenne.
Order your New Diagnosis Pack by emailing firstname.lastname@example.org or click the button below to register and download the New Diagnorsis Resource Booklet.
Teacher Resource Pack
We have spent considerable time with our team of experts from across Australia, to develop this resource for teachers that specifically addresses the issues and special considerations for a child with Duchenne or Becker muscular dystrophy at your school.
The pack contains:
- The Teacher Resource Booklet: this booklet, specific to Duchenne, is a tool for teachers and parents facing educational and classroom related challenges
- The Psychology of Duchenne Muscular Dystrophy: written by Jos Hendriksen, Ph.D. and a team of behavioral experts. It contains information about intelligence, learning, behaviour and other issues relevant specifically to Duchenne
- Emergency Card: this simple card for your wallet or purse will help you talk to doctors, nurses, and hospital administration about the special precautions required if a child with Duchenne suddenly becomes sick or injured
Order your Teachers Pack by emailing email@example.com or click the button below to register and download the Teachers Resource Booklet.
Practical Planning Guide for the NDIS
Planning for the National Disability Insurance Scheme (NDIS) can be a daunting process: the key to success is detailed planning. This resource has been specifically developed to assist people living with a neuromuscular condition and their families during the planning phase of the NDIS.
All the information provided within this resource is of a generalised nature and correct at the time of going to print.
The development of this resource has been a joint collaboration between Save Our Sons Duchenne Foundation and Muscular Dystrophy WA.
Order your Practical Planning Guide for the NDIS by emailing firstname.lastname@example.org.
The following resources are also available separately, email email@example.com for your copy:
- Emergency Cards
- The Psychology of Duchenne Muscular Dystrophy: Written by Jos Hendriksen, Ph.D (postage charge applies)
For further information about resources contact: