Lives unaffected by cystic fibrosis

Our Community Fundraisers

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Activewear lovers are urged to shed those excess Covid-kilo’s and get moving during Cystic Fibrosis Awareness Month, this May, by donating their kilometre’s to Sweat 4 CF – a newly launched initiative which aims to bring the life-changing drug, Trikafta, from Boston to Australia.

Cystic fibrosis (CF) is one of the most common, autosomal recessive, life-limiting diseases affecting children and adults in Australia. It causes a thick, sticky mucus to form which affects full function of the lungs and digestive system. There is no cure.

Trikafta has the ability to significantly improve a patient’s lung function, which is life-changing for any Cystic Fibrosis (CF) patient. The drug is produced by Vertex, which is based in Boston, Massachusetts, and unfortunately is not on the PBS in Australia and costs around AUS$300K per year to be on the drug.  

The idea behind Sweat 4 CF was born when an exercise bike was delivered to local Port Stephens’ student, Mia Warren’s (13), hospital room at John Hunter Hospital, where she is currently receiving treatment. 

Kent Warren, Mia’s father, said, “At first, Mia was reluctant to get on and ride so I encouraged her to ride the equivalent kilometres from Newcastle back home to Port Stephens, then to Sydney. Then the idea came to ride the equivalent kilometres to Boston, together, to bring Trikafta back to Australia for CF sufferers.

“This initiative is not just about raising funds, our goal is to build awareness of the life-changing benefits of Trikafta and get it onto the PBS, and to advocate for thousands of Australian’s suffering from CF,” said Mr Warren.

Mia and her family are encouraging others to join them on the journey throughout the remainder of May, during Cystic Fibrosis awareness month, and Sweat 4 CF by riding, running, walking, or paddling, and donating their kilometres to complete the 32,000km round-trip.

How can I help support this initiative?

  1. Like and follow the Sweat 4 CF Facebook Page
  2. Start exercising and donate your kilometre’s to Sweat 4 CF and share your own efforts on social media by tagging #Sweat4CF Ask your network to support you by donating to the Sweat4CF page or Cystic Fibrosis Australia
  3. Elect to donate to Cystic Fibrosis Australia - supporting research
  4. Elect to donate to the Sweat 4 CF initiative - money raised will go to hospital medical equipment, amenities which make CF patient’s stay in hospital more like home and personal CF medical equipment, such as percussion vests.

Where will the money raised go?

  • Research foundations producing drugs and equipment which assist people with Cystic Fibrosis
  • Equipment for Children’s hospitals to make life whilst staying in hospital just a little bit easier
  • Percussion vests worn by patients with CF which help loosen up lung secretions – costing around $20K per vest
  • Advocacy - meet and communicate with governments to bring Trikafta onto the PBS 

To find out more about Sweat4CF and to donate kilometres or funds, visit www.mycause.com.au/page/228287/sweat-4-cf

Media Contact
For interviews with the Warren family whilst Mia is in John Hunter Hospital or to contact Cystic Fibrosis Australia, please contact:
Lauren Zoneff Communications
Mobile: 0421 085 591
Email: [email protected]

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NEVERREST 2019 

The story of a man who conquered a mountain and another who is determined he is remembered for it. 

Nathan Clarence was born on November 1st of ‘78 with Cystic Fibrosis. Being born with CF is like being at the base of Mt Everest, except the challenge is life, plain and simple. Be prepared to fight for each breath or you won’t make it. A famous climber Alex Lowe was quoted as saying “there are two kinds of climbers, those who climb because their heart sings when they’re in the mountains, and all the rest”. Nathan loved the simple things most, friends, family and life. When he was with friends and family his heart really did sing and it was the sweetest of songs.  

Nathan consistently threw life’s rules and limitations in the bin. At age 18 he was told he wouldn’t be able to have children. He proudly presented Elliott Clarence to close family and friends alongside his wife Ashleigh on April 14, 2016 followed by Flynn on August 9, 2018. He has never been more proud than to be both a husband and a father. 

Nathan was tied to the very fabric of those around him. His legacy was simple. Enjoy your TIME. He didn’t care about money, business, anything. He wanted time. Having a laugh. Being present. At his 40th birthday party he told everyone that his goal was simply to keep showing up. Show up for his friends and show up for his family.  What a world it would be if we all adopted this perspective and appreciated the things in life that matter most. 

Nathan couldn’t have been happier before he passed away on 24th of January, 2019 - age 40. He had a healthy and happy family and he was ‘living the dream’ (a quote he said often).  Nathan fought as hard as he could every day as a husband, father, brother, uncle and dear friend to many. He had everything that mattered to him and will be remembered for the lasting impact his life and his story has had on others. It is one of humble inspiration and impossible courage. Nathan’s final act was donating his organs to save the lives of others. His heart beats on and his story is one deserved of being remembered.  

Enter Sean Clarence - brother to Nathan. Preparing for Neverrest 2019. A challenge that will test his body, mind and heart in an effort to raise money and awareness for CF. He has an army of family and friends behind him to do whatever it takes for him to cross that line. 

Neverrest 2019     5th – 6th September

10,000 push-ups                 1,500 strict pull-ups                42km run           24 hours 

Never rest in the fight against CF 

Never rest until we find a cure 

Never rest until those with CF can 

Again, this is a story of a man who conquered a mountain.                The other wants to make sure no one has to climb it again. 

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