Cystic Fibrosis awareness

Happy and relatively healthy kids Zoe and Jax Vearing have CF and they need your help to spread awareness and find a cure.
Happy and relatively healthy kids Zoe and Jax Vearing have CF and they need your help to spread awareness and find a cure.

ROBE locals Mark Vearing and Kate Baird will be raising awareness for Cystic Fibrosis over the next month.

After a successful raffle at last year's Robe Easter Classic, the pair is hoping it will become an annual part of the competition.

No stranger to the illness, Mark Vearing and partner Cas Hall have two children with CF, however they are not the only local families who live with the illness. They hope this event will provide a good starting point to find a cure.

"We knew nothing about the illness when Zoe was diagnosed," Mark said.

"It's really about making the community aware and helping to find a cure."

Last year the raffle was organised by Kate who is back on board this year to spread the word.

CF primarily affects the lungs and digestive system because of a malfunction in the exocrine system, responsible for producing saliva, sweat, tears and mucus. There is currently no cure.

People with CF develop an abnormal amount of excessively thick and sticky mucus within the lungs, airways and the digestive system. The mucus causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs resulting in recurrent infections which lead to irreversible damage.

Lung failure is the major cause of death for someone with CF.

From birth, a person with CF undergoes constant medical treatments and physiotherapy.

Though Zoe and Jax Vearing are happy and relatively healthy children, they are restricted from certain activities and constantly need medication.

A breakthrough came late last year with the invention of Kalydeco - the first medicine to target the genetic defect that causes CF and can radically improve the lives of those affected.

Though Kalydeco is not for every CF patient, just some with a certain gene, it paves the way for future drugs that may improve the life expectancy of people living with CF.

The only problem is Kalydeco is a very expensive therapy. Without a subsidy, Australians can expect to pay $300,000 for the medication each year.

The raffle is not about raising money for the Vearing family; all proceeds will go to the Cystic Fibrosis Foundation to help with ongoing research into a cure.

Raffle prizes this year include firewood, vouchers from various local businesses, local wines, gift hampers with products from Holiday and Loaves and Fishes, Mahalia coffee, local Restaurant vouchers, a two-night stay at The Dunes and much more.

Raffle tickets can be found in many Victoria St businesses, $1 tickets to be drawn at the Easter Classic.

All proceeds from the Cantina Kick barbecue at the surf competition and the Robe Hotel's Friday night draw for the month of March will also be donated to the CF Foundation.