/Tag: Duchenne

DMD Clinical Trials

DMD Clinical Trials Our friends at Neoclinical are looking for Australian boys over 5yo with #duchennemusculardystrophy to participate in an #australianfirst clinical trial. The trial medication has not previously been available for #DMD and is hoping to improve boys quality of life. If you are interested, or for more information please contact Megan@neoclinical.com #musculardystrophyaustralia #duchenne [...]

By |2019-02-25T09:58:30+00:00February 25th, 2019|information, research, trials|0 Comments

Steroids for Duchenne MD

Steroids for Duchenne MD: the pros and cons. For over 20 years boys with Duchenne muscular dystrophy (MD) have been treated with steroids, which is currently the only medication proven to slow the progression of the condition. In Australia, more than 90 percent of boys with Duchenne MD are now treated with steroids but this [...]

By |2018-11-25T15:59:53+00:00November 25th, 2018|Comments Off on Steroids for Duchenne MD

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+00:00August 16th, 2018|disorders, research, trials|0 Comments

Victorian Muscle Network Symposium

Victorian Muscle Network Symposium l-r - Prof Peter Currie, Prof Andrea Maier, Boris M Struk, Prof Gordon Lynch & Prof Kathryn North The Inaugural Victorian Muscle Network Symposium was held at Bio21 yesterday (19th June 2018) prior to the Annual Meeting of the International Society for Stem Cell Research (ISSCR). International speakers presenting included Prof [...]

By |2018-06-20T23:18:58+00:00June 20th, 2018|Boris M Struk, presentation, research, trials|0 Comments

Duchenne MD – Spanish

Distrofia Muscular Duchenne ¿Qué significa Distrofia Muscular Duchenne? Hay muchas clases de DM y la causa de todas es un defecto en los genes (las unidades hereditarias que los padres traspasan a sus hijos). En el caso de la distrofia muscular Duchenne (DMD) la ausencia de proteína distrofina hace que los músculos se deterioren y [...]

By |2018-06-01T03:47:35+00:00August 24th, 2017|Comments Off on Duchenne MD – Spanish

FDA Approves Drug for Treatment of DMD

Chantal Coles PhD NMDRC provides a Research Update... On September 19th last year the U.S Food and Drug Administration (FDA) approved the first drug for the treatment of Duchenne Muscular Dystrophy, called EXONDYS 51™. This drug, formally known as Eteplirsen, is a gene modifying agent that bypasses a stop codon of the dystrophin, forming a [...]

By |2018-06-01T03:49:09+00:00April 3rd, 2017|information, 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+00:00September 30th, 2016|Comments Off on DMD – A Guide for Parents