Spinal Muscular Atrophy

Looking for Teenagers Living with SMA

Looking for Teenagers Living with SMA (Spinal Muscular Atrophy) to take part in market research White Rabbit Consulting is an independent research agency and we are giving you the opportunity to take part in some market research to share your experiences about living with SMA. The research is designed to better support teenagers who are [...]

Looking Back and Moving Forward

Launch of National Duchenne Muscular Dystrophy Register On Monday November 15th 2010, the Director General of Health launched the Duchenne Muscular Dystrophy (DMD) Registry. Patient registries are infrastructure that supports clinical and translational research. The DMD registry was created in response to developments in genetic technology and in particular clinical trials currently being planned, that [...]

Spinal Muscular Atrophy (SMA) Research Update

Spinal Muscular Atrophy (SMA) Research update and treatment - AUSTRALIA A research update by Prof. Monique Ryan Director, Department of Neurology Group Leader, Murdoch Children's Research Institute,  Royal Children's Hospital There has been a lot of activity in the clinical trial space for SMA in the last two years. Two hospitals in Australia- the The [...]

Respiratory & Ventilation

Respiratory & Ventilation Respiratory considerations in neuromuscular disorders particularly Duchenne MD and SMA form a significant part of caring for and providing the best possible outcome for the affected individual. The following links address several important considerations:

Research Round-up SMA and ALS

SMA and ALS In the run up to Christmas we are publishing summaries of the progress made this year towards treatments for muscular dystrophies and related neuromuscular conditions. This week we focus on the conditions that affect the motor neurons – spinal muscular atrophy (SMA) and amyotrophic lateral sclerosis (ALS, also known as motor neurone [...]

Scoliosis

Scoliosis NOTES FOR PARENTS OF MUSCLE AND NERVE DISORDER PATIENTS Introduction Scoliosis is the medical term for curvature of the spine. In diseases of the muscles and nerves, curvature of the spine occurs because the muscles on either side of the spine are weak. They are not working effectively to hold the spine straight. Once [...]

Comprehensive Links to Specific Disorders

Comprehensive Links to Specific Disorders Comprehensive Information on Muscular Dystrophy, Neuromuscular Disorders and other contained within this "The Home of MDA". Includes links to OMIM and other credible sources Muscular Dystrophies: Duchenne Muscular Dystrophy Duchenne MD & Becker MD Fact Sheet Duchenne MD OMIM overview Duchenne MD OMIM Dystrophin Becker MD OMIM overview DYSTROPHINOPATHIES: Duchenne [...]

Spinal Muscular Atrophy Type 4 (adult onset)

Spinal Muscular Atrophy Type 4 What is Spinal Muscular Atrophy Type 4? Spinal muscular atrophy (SMA) is a genetic condition which affects the nerves that control muscle movement – the motor neurons. It is named 'spinal' because most of the motor neurons are located in the spinal cord. 'Muscular' is in the name because it [...]