Striding Out

October 19th, 2017
Striding Out
The Great Strides fundraiser is being held for the eighth time in Strathalbyn on Sunday, October 29, as it continues to raise funds for and awareness of Cystic Fibrosis.

Commencing at the Soldier’s Memorial Gardens, the annual four-kilometre walk will follow the Angas River walking trail.

Carlee Stewart’s family is one of five local families involved in the organisation of the event, and they all have children suffering from cystic fibrosis.

One of those affected is Carlee’s eight-year-old daughter Emily. Despite having cystic fibrosis, Carlee said Emily is very healthy compared to some others affected, but she has to do a lot to ensure that remains the case.

“To maintain her health, Emily has to do at least an hour and a half of physiotherapy and take 40 tablets every day, as well as having a very specific diet as there are certain foods she can’t digest due to it being a pancreatic condition too,” Carlee said.

“We have to discourage her from doing different things, such as gardening as the germs can make her sick, and she’s never been to a play cafe as she can’t be around children with colds.
“If she gets a cold, she could get lung damage or a chest infection and be put in hospital on an intravenous drip because she just can’t fight as well as others.”

Fighting cystic fibrosis is expensive for the families, for example Emily needs a nebulizer everyday, so the support they receive from Cystic Fibrosis South Australia (CFSA) is essential.
In order to receive that support however, the non-for-profit organisation needs funds, and that’s where Great Strides comes in.

The organising families are aiming to raise $10,000 at the Strathalbyn fundraiser, through the 150 participants in the walk and the barbeque, raffle and children’s activities at the end.
While the funds raised are essential for CFSA to help support the families, and also put money into research, Great Strides is also important for raising awareness.

Carlee said that although children with cystic fibrosis often miss out on different aspects of life, this event is all about them.

“Events like this make Emily feel special, the kids acknowledge they are different but realise it’s not a negative thing. People come along and learn about her and her condition.”

This newfound knowledge about cystic fibrosis that occurs after Great Strides is what Carlee is after.

There is a drug that would be available to Emily at 12 years of age, however it is not on the government’s subsidy list and at $200,000, it is out of reach for most families.

That drug would “turn off” the condition and would help 80 per cent of the cystic fibrosis population, however the government is supporting a drug that only helps five per cent of sufferers instead.

“We have to keep fighting and do all we can to get cystic fibrosis out there,” Carlee said.

“If more people become aware of what we are facing, there is more chance of the funding happening for us too.”

“Cystic fibrosis sufferers have an average lifespan of 37 years, and not everyone makes that, so we have to try to increase that.”

Eight years ago, the Natt family started the Great Strides fundraiser in Strathalbyn, in honour of their daughter who lost her battle with cystic fibrosis.

The community got behind the family and made it a successful event, which has grown each year.
Wendy Natt has been pleased with how big the event has become.

“It’s been great having the community support and getting the other families involved and supporting one another has been wonderful,” Wendy said.

“Hopefully we can keep it going and get it bigger and better.”

They have started one in the Barossa now too, 2017 being the first year there have been three Great Stride fundraisers in South Australia.

Julia Langrehr, Chief Executive Officer of CFSA, said fundraisers like Great Strides are essential for the organisation.

“With 1 in 25 Australians carrying the faulty CF Gene and no cure for CF, we know that children will continue to be diagnosed with CF and they and their families will face a daily life long struggle,” Julia said.

“The funds raised help CFSA to continue the work of supporting people living with CF, their carers and families and we hope that at each Great Strides event we will have the opportunity to share the CF story with people who may not already know what CF is and how it affects those who live with it.”

Great Strides for Cystic Fibrosis begins at 9am and you can register for the event at http://www.everydayhero.com.au/event/greatstrides2017/strathalbyn

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