SMA

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 [...]

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 [...]

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 [...]