Judy Bailey helps make a WORLD of difference
Judy Bailey helps make a WORLD of difference for Muscle Wasting Disease
The Muscular Dystrophy Association are proud to once again be supported by Judy Bailey for its annual bow tie appeal (22-30th March). Judy will appear alongside MDA member, Nicholas Brockelbank who lives with Duchenne Muscular Dystrophy. Judy and Nic will feature on the national television, radio and print campaign which the MDA hopes will bring greater awareness to these rare conditions. “My long relationship with the association came about because of my son's childhood friend who has Muscular Dystrophy. It was this relationship that drove me to get involved and help progress the cause in New Zealand”, says Judy.
The MDA uses the image of a bow tie to demonstrate the difficulties our members face doing many everyday tasks. The exclusively designed bow tie pins are available in all WORLD stores, as well as ASB branches nationwide for a gold coin donation. There will also be boxes and collections throughout the country.
The Association needs this campaign to be a success, people diagnosed with these rare neuromuscular conditions have no one to turn to, and quite often even their GPs know very little about these conditions. The MDA offers people affected one on one support, specialist information, counseling and advocacy, to name just a few of the things it does.
The MDA’s biggest challenge is awareness of the association itself and wasting muscle disease. Awareness is so low getting the much needed support to provide these vital services through donations is incredibly difficult. “We are competing against much bigger causes and it’s hard to have the voice we need for our clients”, says MDA Information and Resource Manager, Jayne McLean.
Nicholas’s condition, Duchenne Muscular Dystrophy is a serious and debilitating form of muscle disease. It’s caused by the absence of the protein dystrophin, causing muscles to deteriorate and break down. As well as arm and leg muscles, the muscles involved in breathing become very weak and it also affects the muscles of the heart.
People like Nicholas and his family need ongoing support, specialist information and for someone to step up and be the voice for them and others with muscle wasting diseases – so it’s one less battle they have to face, one less thing they have to think about.
Right now there is no cure and the treatments available have limited effects. There is so much work that needs to be done in this field. Muscular Dystrophy and other neuromuscular conditions are unpredictable and incurable. They can affect anybody, at any age. These disabling conditions are often genetic and sometimes occur more than once in a family, however often there is no previous family history.
There is hope for life saving treatments on the horizon. Since the human genome was mapped there have been many research initiatives undertaken to understand and treat muscle wasting disease. However as we are learning, the cost of any resulting treatments will be likely to be so expensive that government funding agency Pharmac is unlikely to fund them, largely because these are rare conditions. The MDA needs to be ready and able to fight this cause for our clients now and in the future but rely heavily on donations to do this.
It’s simple to help this bow tie week, you can text ‘bowtie’ to 4483 to donate $3, call 0900 426 98 to make an automatic $15 donation, or donate securely online at www.mda.org.nz.