Cystic Fibrosis fundraiser at the Toormina Hotel

Kirsty Hodges before the use of Trikafta.

 

TWO local families are joining forces on Saturday 29 May at the Toormina Hotel to hold a sensational fundraiser to raise money for Cystic Fibrosis.

‘Shave and Cut for a Cure and Charity Auction for Cystic Fibrosis’ will kick off at 2pm will feature a charity auction, lucky door prizes, raffles including meat, chicken and seafood trays and live music to follow.

Finger food has been generously donated by Toormina Hotel as has bistro prizes, surprises from the bottle shop and much more.

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Cystic fibrosis is the most common, life-threatening recessive genetic condition affecting Australians. 3,500 people are living with CF in Australia and 1 in 25 people carry the recessive CF gene.

The current life expectancy for Australians with CF is 38, less than half that of the average Australian.

1 in 2500 babies are born with CF in Australia and both parents must carry the recessive gene.

CF causes an abnormal build-up of thick and sticky mucus in the lungs, airways, and digestive system.

Treatment requires intensive daily physiotherapy to clear the lungs and airways, countless medications, and frequent hospitalisations.

May is Cystic Fibrosis (CF) awareness month and all monies raised will be going to Cystic Fibrosis Community Care.

This cause is awfully close to the heart for these families as 42-year-old mother Kristy Hodges was diagnosed with Cystic Fibrosis at age 16 months and in 2019/2020 faced the battle of her life with this life-threatening disease.

Another Sawtell/Toormina local family involved in the fundraiser have a four year old daughter who was diagnosed with CF at birth and in her short life has also faced some significant challenges caused by this disease.

So come along to the Toormina Hotel on Saturday 29 May 2021 from 2pm-5pm to support these families whilst raising money for Cystic Fibrosis Community Care helping CF sufferers Australia wide and also raising important funds towards research to find a cure.

On the day, there will be a petition to have CF treatment drug Trikafta placed on the Pharmaceutical Benefits Scheme in Australia.

As Trikafta is not a part of the Pharmaceutical Benefits Scheme, Australian CF sufferers who do not qualify for compassionate access currently need to pay $410 000 per year to access the drug.

The petition will be sent alongside an accompanying letter to Greg Hunt, Minister for Health, and Pat Conaghan, Member for Cowper.

 

Kirsty again, this time after accessing Trikafta.

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