Benjamin Jago running for Kim – Run for Strength Fun Run 2018

Benjamin Jago is participating in our Run for Strength Fun Run 2018. "No better way to bring family and friends together for the day to try and raise money for those less fortunate than us. The 5/10km run/walk on a scale of 1 to MD does not even come close to a 1. What these [...]

By |2018-06-01T03:49:05+00:00November 24th, 2017|ChallengeMD, Event, fundraising|0 Comments

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 [...]

By |2018-06-01T03:49:11+00:00November 17th, 2016|atrophies, research, trials|0 Comments

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:

By |2018-06-11T23:26:27+00:00August 19th, 2016|Comments Off on Respiratory & Ventilation

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 [...]

By |2018-07-03T15:24:49+00:00July 23rd, 2016|Comments Off on Research Round-up SMA and ALS


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 [...]

By |2018-06-11T23:24:25+00:00July 23rd, 2016|Comments Off on Scoliosis

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 [...]

By |2018-12-14T13:41:14+00:00July 23rd, 2016|Comments Off on Comprehensive Links to Specific Disorders