ORGANISATIONS THAT ASSIST PEOPLE WITH MUSCULAR DISEASES - MUSCULAR DYSTROPHY (MD)

1. ORGANISATIONS THAT ASSIST PEOPLE WITH MUSCULAR DISEASES - MUSCULAR DYSTROPHY (MD)

2. ORGANISATIONS There are various organisations through out the world that assist people with muscular disease, in particular, MD, some of these include: • Facioscapulohumeral society ( FSH Society of America) • Duchenne Foundation (Parent Project) • Charities Aid Foundation ( CAF) • Muscular Dystrophy NSW • Muscular Dystrophy Australia • Muscular Dystrophy Campaign of London • National Institute of Neurological Disorders & Stroke of America

3. HOW THESE ORGANISATIONS HELP INDIVIDUALS These organisations help individuals suffering from MD and their families in many ways. These include: • Providing research into the various forms of MD • Providing emotional support for families living with people that have MD. • Providing clinics for people suffering from MD • Providing home care support for families with MD sufferers • Providing assistance by organising camps and retreats for both people suffering from MD and their carers and a vast amount more

4. LIST OF CRITERIA Different organisations providing assistance to individuals with muscular dystrophy have different requirements but they assist all individuals with the following: DUCHENNE SOCIETY • Treatment by way of Consensus care • Physiotherapy • Steroid care • Cardiac care • Occupational and Recreational Therapies • Research information on MD

5. In contrast the Muscular Dystrophy Australia provides the following assistance to those suffering MD: • Physiotherapy • Recreational therapy • Respiratory therapy • Physical therapy (prevention or assitancewith scoliosis) • Muscle clinics • Aids and equipment In conclusion The Muscular Dystrophy Australia Society provides more assistance to those suffering from MD in Australia especially as the Duchenne Society is based in England and the UK.

6. ARTICLE Muscular Dystrophy refers to a group of hereditary muscle wasting diseases that weaken the muscles which help move the human body. Childhood forms of the disease can include Duchenne, Becker, Myotonic, Limb Girdle, Emery-Dreiffus etc. People with Muscular Dystrophy’s muscles get extremely week and eventually stop working. The genes in their bodies tell the body how to make the proteins needed for the body to stay healthy and strong. In Muscular Dystrophy sufferers these genes give the body the wrong information which leads to the proteins not being made properly.

7. Muscular Dystrophy like all other diseases has various Associations and Organisations which are available to assist individuals and their families by providing valuable information. These organisations or Associations provide assistance by informing individuals and their families about the current and up to date research and clinical trial information and data. They also provide assistance by organising muscle clinics, physiotherapy, cardiac care and steriod care as well as occupational therapy and recreational care in the form of camps and retreats to assist not only the sufferers of Muscular Dystrophy but also their familes in dealing with such a crippling disease. Anyone requiring information on muscular dystrophy should contact the various organisations worldwide including, in Australia, Muscular Dystrophy Australia (MDA) and Charities Aid Foundation (CAF). In the USA, National Institute of Neurological Disorders and Stroke (NINDS) and Facioscapulohumeral Society (FSH). In the UK, Muscular Dystrophy Campaign and the Duchenne Foundation