While cancer and leukaemia are headline news items, little is known about SMA.

SMA Australia chief executive and founder Julie Cini, of Berwick, has made it her personal mission to raise the profile, and much-needed research funds, for this disease.

In 2004, at age three months, Julie's first child Montanna was diagnosed with type one SMA and died nine months later.

This prompted Julie and husband Ross to form Australia's only SMA foundation.

In 2006, Julie fell pregnant with her second daughter but the joy was shortlived as only weeks later, Ross was killed in a car accident.

When Zarlee was born in December 2006 she was also diagnosed with SMA and died shortly after her first birthday.

"I live for the day when I can say to parents of a child with SMA 'we can give you something, we can cure this'," says Julie.

"That's really what drives me."

The rare, inherited disease results in loss of nerves in the spinal cord and weakness of the muscles that control posture, movement and breathing.

Despite its rarity, one in 30 people carry a recessive gene, and if both parents carry the gene there's a one in four chance of having a child with SMA.

Last month, SMA Australia provided a West Australian research team, headed by Professor Steve Wilton, with $100,000 to carry out further studies into a cure.

"We've been able to give enough money to cover 12 months of gene therapy research," said Julie.

"But we need to be able to fund this research for many more years and with no government funding, we rely on support and generosity from the community."

Julie says her focus is education and prevention, and she has also led a push for gene carrier testing.

SMA Australia will hold a morning tea to raise awareness of SMA from 10am on August 6 at the Berwick Inn.

Details: 9768 9052 or visit www.smaaustralia.org.au