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Aiming high

25 September 2008

A generous gift from a leading business figure will help scientists to investigate the third-most common form of muscular dystrophy.

It's a typical weekday morning in Melbourne's CBD: trams are trundling down Collins Street, workers file into office buildings and car drivers brave the traffic. Meanwhile, up on the 31st floor of a five-star hotel, a former Macquarie Bank executive and committed philanthropist enjoys the ambience and city skyline.

After years supporting the arts, Aboriginal and disability groups, Bill Moss AM is in town to discuss the charity he has personally financed – FSHD Global Research Foundation – which he hopes will find treatments for patients living with facioscapulohumeral dystrophy, or FSHD.

FSHD is an inheritable disease where muscles in the face, shoulder and upper arms weaken and are progressively lost. The disorder can also spread to the abdomen, hip and foot muscles, and affected people are unable to walk.

What motivates Mr Moss to fund FSHD projects is that research into this third-most common muscular dystrophy is almost non-existent, unlike the higher profile Duchenne's muscular dystrophy.

"Up to now muscular dystrophy has been treated as one disease but they are all different and a cure for one is not a cure for all," he says.

"Globally there is little research into FSHD, it's not taught at medical schools, it's misdiagnosed and there are no patient databases."

Mr Moss, who also lives with the disease, isn't sitting on his laurels. In an Australian first, his foundation has donated around $150,000 to Professor Christina Mitchell's team at Monash University's School of Biomedical Sciences to analyse the levels and distribution of novel proteins that regulate muscle mass in human FSHD skeletal muscle samples, and to study muscle wasting in a mouse model of the disease.

He is enthusiastic about this partnership.

"Monash has been fantastic," he says.

"From a couple of words written about the foundation in the newspaper, Professor Nick Birrell, director of the Monash University Asia Pacific Centre for Science and Wealth Creation, contacted us and said, 'We’ve got an idea for FSHD research.'"

While it's early days for breakthrough announcements, Mr Moss is upbeat about the future.

"There is a golden opportunity for Australia to take the lead in FSHD research," he says.

"I think we’re capable of doing that."

He also plans to raise money from government, community and business, so that the Sydney-based charity can fund research projects overseas and increase their chances of success.

As a public business figure, Mr Moss doesn't often get personal about FSHD. He left Macquarie Bank after 23 years' service because he was physically exhausted.

"I'd work 16 hours a day, come home and have no energy to take my shoes off, or I'd collapse on the floor … then spend weekends sleeping," he says.

His workload may have decreased, but he remains busy. His small, loyal team are preparing back-to-back launches in Australian capital cities to increase FSHD awareness, speak with people living with the disease and raise money.

"We're excited that people are interested in helping and want to carry out FSHD research," he says.


Bill Moss

Bill Moss AM