Raise in profile for muscular dystrophy
The first-ever New Zealand Research Foundation specifically dedicated to neuromuscular conditions has been established.
It is part of far-reaching changes which aim to raise the profile of neuromuscular diseases in New Zealand.
In addition, the Muscular Dystrophy Association, which offers services to those living with neuromuscular conditions, has been renamed the Neuromuscular Alliance.
There are more than 60 different types of neuromuscular conditions, which affect the muscles, nerves which control muscles and the interactions between the two. They strike men and women equally, are found in all ethnic groups and can develop at any age.
They can cause disabling loss of muscle strength and result in progressive deterioration of nerves or muscles or both, depending on the condition involved.
Movement and mobility is usually affected but speech, breathing and heart function problems can develop. The effects can vary widely within the same condition, even in the same family.
Chair of Neuromuscular Alliance Rodger Alexander says the unpredictability of neuromuscular conditions is one of the reasons for setting up the Neuromuscular Alliance Research Foundation.
An independent medical and scientific advisory committee, comprising health professionals and scientists with specific experience in neuromuscular conditions, will be appointed to assess and recommend priority areas for research.
Neuromuscular Alliance chief executive offi Graeme Longdell says the initiative is important because it brings to members the precious gift of hope and confidence for tomorrow.
“Now is the time to bring our organisation together, to speak with one voice under a common identity and to project a more relevant image for the future”.
Independent research conducted in 2006 by the then Muscular Dystrophy Association among its members reinforced the need for change. The association’s two largest member groups are affected by CMT and Myotonic Dystrophy, neither of which are muscular dystrophies.
For more information, contact the Neuromuscular Alliance on 0800800-337 or www.mda. org.nz