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UPDATE ON SMA RESEARCH AND TREATMENT- AUSTRALIA

There has been a lot of activity in the clinical trial space for spinal muscular atrophy in the last 2 years. Nusinersen is an antisense oligonucleotide, or a short synthetic stretch of nucleic acid, that is designed to specifically bind SMN2 transcripts and “correct” SMN2 gene expression. Two hospitals in Australia- the Royal Children’s Hospital […]

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CMT Gene Explorer now available!

Professor Joshua Burns, Dr Manoj Menezes and the Centre of Research Excellence in Neuromuscular Disorders have just released a new app for early career neurologists, medical trainees and clinicians looking to further understand the genetic basis of Charcot-Marie-Tooth disease (CMT).

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Update: evidence based guideline summary for FSHD

Getting the support you and your health profesionals need The Foundation is thrilled to release a range of educational toolkits for patients, GP’s and Allied Health Professionals. Our goal is to empower our community when championing for support within the medical world. In September 2015 FSHD Global convened a workshop of 13 leading international and Australian […]

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MyLifeMyVoice study

The MyLifeMyVoice study seeks to describe the current health and wellbeing of teenagers living with NMD in Australia and New Zealand, and explore what teenagers think and feel about engagement in their health care. This study involves a questionnaire that can be completed with the help of a study volunteer. A few teenagers are also […]

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