Standing Together To Make A Difference
Neuromuscular conditions, including Muscular Dystrophy, are debilitating diseases that affect 1 in 1,000 people in Australia generally starting in early childhood.
While there have been vast improvements in the treatment of neuromuscular conditions, there is still more to be done. Thanks to Stand Tall for a Cure’s ‘Stand Tall Ball’, The Institute for Neuroscience and Muscle Research (INMR) and the Muscular Dystrophy Foundation will be able to channel much needed funds into Muscular Dystrophy research, education and advocacy.
The ‘Stand Tall Ball’ raised an amazing $120,000 towards researching for improved treatments and a cure for Muscular Dystrophy. The Muscular Dystrophy Foundation was allocated $36,000 to continue their education and advocacy in regards to neuromuscular conditions. The INMR was allocated $84,000 to fund research into Becker’s Muscular Dystrophy, a type of Muscular Dystrophy that involves slowly worsening muscle weakness of the legs and pelvis.
Drew Schofield, founder and chair of Stand Tall for a Cure, who is himself a sufferer of Becker’s, is confident that the money raised will make a difference. “This money is being placed in the hands of two organisations who will deliver upon what Stand Tall for a Cure is aimed toward – increasing awareness of the disease and finding a cure for all forms of Muscular Dystrophy”.
“Drew has certainly done his part in raising awareness and much needed funds and it was a wonderful opportunity to introduce Drew to Jerry Lewis when he visited Australia last year” said David Jack, CEO of the Muscular Dystrophy Foundation of Australia. “Jerry Lewis has raised over $2.5 billion over 60 years in support of advocacy, awareness, client services and research.”
In the lead up to the Stand Tall Ball, the Stand Tall Ball Committee met with Professor Kathryn North, Department Head of INMR, to gain an understanding of what research was being conducted at INMR.
“I was delighted when I was invited to speak the Stand Tall Ball,” Professor North said. “It is great to have developed a relationship with Stand Tall for a Cure, as our partnership can only bring good things to the area of Muscular Dystrophy research – especially in researching Becker’s”.
Becker’s is a form of inherited Muscular Dystrophy which mainly affects males. Similar to Duchenne Muscular Dystrophy, but progressing at a slower rate, Becker’s affects 3-6 people per 100,000 and generally starts to present around age 12.
The INMR is currently studying and identifying proteins and pathways that are involved in repairing muscle damage, and whether other membrane repair proteins will be able to aid in the treatment of Muscular Dystrophy.
“We have great plans for Standing Tall for a Cure,” says Mr Schofield.
ABOUT MUSCULAR DYSTROPHY FOUNDATION OF AUSTRALIA
Muscular dystrophy is a neuromuscular, genetic disorder which results in the progressive deterioration of muscle strength and function. The most common form in childhood is Duchenne Muscular Dystrophy, which can see a young boy using a manual wheelchair by the age of 8, and being completely dependent on an electric one by his early teens. Life expectancy for this disorder is usually only until early adulthood. There are many other types of neuromuscular disorders, affecting people of all ages. While most forms of muscular dystrophy occur in babies or children, some others appear in late adolescence or adulthood.
Muscular Dystrophy Foundation of Australia enables state Muscular Dystrophy associations to contribute to an improved quality of life for people of all ages and their families. This results in a better life for clients and loved ones, through a comprehensive approach, from providing the essentials to enabling the realisation of dreams. For more information: www.supportMD.org.au
ABOUT THE CHILDREN’S HOSPITAL AT WESTMEAD
The Children’s Hospital at Westmead is the highly respected, largest paediatric centre in NSW, providing excellent care for children from NSW, Australia and across the Pacific Rim. It forms part of the Sydney Children’s Hospitals Network (Randwick and Westmead).
Established in 1880, The Children’s Hospital at Westmead is a public Hospital and registered charity with 3,000 staff working in 150 departments. 70,000 sick children and their families are cared for each year in a family-focused, healing environment – this includes 29,000 inpatient admissions, 50,000 emergency department presentations and 735,000 outpatient occasions of service.
Funded by the NSW Government, The Children’s Hospital at Westmead provides significant extra services aided by the generosity of individual and corporate donors. For more information visit www.chw.edu.au
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