Donate

Seminars & Presentations

Save our Sons Duchenne Foundation ACTT Now Conference

Three members of our team travelled to Sydney in September for the Save Our Sons Duchenne Foundation 2019 ACTT Now Conference. Over two days a vast array of national and international speakers presented the latest information on Duchenne management.

A highlight was international speaker Dr James Poysky from Baylor College of Medicine in the US, who gave informative presentations on various topics and referenced the Best Practice Management Care Guidelines for DMD.

Many of the presentations, including Dr Poysky’s referenced the Best Practice Management Care Guidelines for DMD – a  family friendly version of which can be found here

The full version of the guidelines can be found Part 1 – Part 2 – Part 3 (the newest edition, released in January 2018 which covers primary care, emergency management, psychosocial care and transition).

Facioscapulohumeral dystrophy (FSHD) Research Projects

WHO?

Researchers at The Royal Children’s Hospital are looking for children and adolescents aged 6-18 years who have been diagnosed with FSHD, to participate in one or both of these studies:

  1. The effect of the nutritional supplement (creatine monohydrate) on strength and muscle mass in children with FSHD
  2. Investigating the use of both patient reported and physical FSHD specific assessments to measure strength and function

WHAT?

The creatine study involves 5 visits over an 8 month period and requires your child to drink a supplement in a glass of milk each day. We will assess your child’s strength and function to see if taking the supplement has any effect.

The assessment study requires two visits 2-3 weeks apart. This study can be completed in isolation or the assessments can be done in conjunction with the creatine study and will not require any extra time if you choose to participate in both research studies.

Recruitment of participants has begun at The Royal Children’s Hospital and researchers are hoping to roll out both research studies to other Australian sites.

If you would like more details about the research, please contact Katy de Valle


Community Organisation Presentations

Muscular Dystrophy WA can deliver tailored education sessions to your organisation. Depending on content, the session can be from 1 – 3 hours, and fees may apply. Information can include;

  • What is Muscular Dystrophy?
  • Types of Muscular Dystrophy
  • Management
  • Support services

For further information or to arrange a session please contact Piper Marsh on 9380 3400.

Past Presentations

An Evening With Researchers bought together members of the Perth (WA) neuromuscular community to hear the latest respiratory health research in neuromuscular conditions. The Evening was held in conjunction with Telethon Kids Institute and Muscular Dystrophy WA.