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Racing to find a cure for SMA

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June 6, 2018 by admin

World tour: Julie Cini is looking for participants for The SMAmazing Race. Picture: Ted KloszynskiA GLOBAL fund-raising race next October to help fight spinal muscular atrophy isn’t just amazing – it’s SMAmazing.
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Berwick resident Julie Cini has invited teams to sign up for the race to support research into the condition.

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

This prompted her and husband Ross to form Australia’s first – and to date, only – foundation for the genetic disease, which causes progressive deterioration of motor neurons in the spinal cord.

In 2006, Ms Cini became pregnant with her second daughter but tragically lost Ross in a car accident only weeks later.

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

Ms Cini said reality TV game show The Amazing Race inspired to create her own version, The SMAmazing Race, so ordinary Australians could take part in their own overseas adventure.

Teams of two will spend 10 days racing through mystery locations in and around Asia. Racers will be given a choice of challenges similar to those seen on the TV show.

Points will be awarded and an eventual winner named at the end of the race. Six teams have already paid a $500 entry fee and pledged to raise at least $10,000 to cover travel costs.

Ms Cini said The SMAmazing Race would have at least 12 teams but could be expanded to include many more.

All surplus funds from the race will go directly to the Spinal Muscular Atrophy Association, which will use the money to provide an affected family with specialist equipment, including a ‘cough assist’ machine.

Details: smaaustralia南京夜网.au.


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