/Tag: DMD

DMD Lifetime Mobility Scale Research Study

DMD Lifetime Mobility Scale Research Study Muscular Dystrophy Australia is assisting the UC Davis Neuromuscular Research Center in USA to seek participants for an online survey about movement and daily living abilities for people with Duchenne muscular dystrophy. The Duchenne Muscular Dystrophy Life-Time Mobility Scale (DMD-LMS) is a set of questions that ask about how [...]

By | 2018-08-16T18:28:09+00:00 August 16th, 2018|disorders, research, trials|0 Comments

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 [...]

By | 2017-06-28T17:30:17+00:00 June 28th, 2017|disorders, information, news, research, trials|0 Comments

DMD – A Guide for Parents

DMD - A Guide for Parents Introduction Most people reading this booklet for the first time will have just been told that their son (and very rarely daughter) or the child of a relative has the disorder called Duchenne muscular dystrophy. To be told that a child will lose the ability to walk, the ability [...]

By | 2018-07-03T16:43:41+00:00 September 30th, 2016|Comments Off on DMD – A Guide for Parents

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+00:00 August 19th, 2016|Comments Off on Respiratory & Ventilation

Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy There are many types of muscular dystrophy (MD); all are caused by errors in genes (the units of inheritance that parents pass on to their children). In Duchenne muscular dystrophy (DMD) lack of the protein dystrophin causes muscles to deteriorate and break down, leading to progressive difficulty with walking and general mobility. [...]

By | 2018-07-03T16:04:16+00:00 July 23rd, 2016|Comments Off on Duchenne Muscular Dystrophy

Glossopharyngeal Breathing (GPB)

Glossopharyngeal Breathing (GPB) Air Stacking or "Frog Breathing" Both inspiratory and, indirectly, expiratory muscle function can be assisted by "air stacking", technically known as "glossopharyngeal breathing" (GPB). For individuals with weak inspiratory muscles and no ability to breathe on their own, GPB can provide normal lung ventilation and perfect safety throughout the day without using [...]

By | 2018-06-11T23:23:02+00:00 July 23rd, 2016|Comments Off on Glossopharyngeal Breathing (GPB)

Ventilation Factsheet

Ventilation Factsheet There are many different neuromuscular conditions in which weakness of the breathing muscles requires monitoring and treatment and may eventually need some form of mechanical ventilation.  In Duchenne muscular dystrophy most boys/young men will need to start using a ventilator in their late teens to early twenties. In some other conditions such as [...]

By | 2018-06-11T23:25:08+00:00 July 23rd, 2016|Comments Off on Ventilation Factsheet

Disappointing Research…

Exon skipping trial results released In a press release GlaxoSmithKline and Prosensa have said that the results of the phase 3 exon skipping trial for Duchenne muscular dystrophy are disappointing. Preliminary results show that at the end of the 48 week trial, treated boys were unable to walk any further in six minutes than boys [...]

By | 2018-07-02T14:46:01+00:00 July 23rd, 2016|Comments Off on Disappointing Research…