Cure4CF Update

We’re delighted to welcome Lauren Cooper as a new Cure4CF Ambassador.

Diagnosed with cystic fibrosis (CF) at just 10 days old, Lauren has spent her life experiencing firsthand the challenges of CF, but also the extraordinary difference research and medical advances can make.

Now 26, Lauren is a mum to three-year-old Ruby, expecting her second child in October, and building a career in public relations specialising in health and wellbeing. She lives on Sydney’s Northern Beaches, where she loves getting outdoors with her family, walking through the bush or along the beach, and making the most of the everyday moments that matter most.

But Lauren’s journey to this point has not been straightforward.

Growing up with CF

Lauren describes her childhood as relatively normal, despite regular CF clinic appointments and three or four hospital admissions each year.

She danced, did gymnastics and played tennis before discovering her greatest sporting passion, netball.

By around 12, Lauren’s health had started to deteriorate. She was sick more often than she was well, including spending two Christmases and one New Year in hospital. Increasing infections and declining lung function meant she could no longer participate in sport as she once had. By 15, Lauren was spending more time unwell than healthy, missing significant amounts of school and becoming increasingly isolated from her friends.

At 16, she developed a mycobacterial infection that destroyed around 50 per cent of her lung function. She spent five months in hospital, followed by a further 12 months receiving IV antibiotics at home.

The treatment saved her life, but it came at an enormous cost. The antibiotics caused permanent hearing loss, eventually requiring Lauren to have bilateral cochlear implants.

It was, she says, the hardest year of her life.

A turning point

By the end of 2018, Lauren had transitioned to adult CF care. After another year of declining health, she was listed for a double lung transplant.

She never received one.

Instead, Lauren was granted compassionate access to Trikafta.

For the first time in years, her health began to improve. Her lung function recovered, she came off the transplant list and she began to imagine a future that had once seemed impossible.

She completed her studies, began her career, built a family and married her husband.

“Trikafta gave me the chance to live the life I had always hoped for but never believed I would have,” Lauren says.

For Lauren, that experience is a powerful reminder of what research can achieve.

Research changes what is possible

Lauren has witnessed enormous changes in CF treatment throughout her lifetime, from advances in physiotherapy and antibiotics to the development of CFTR modulators.

She has taken Orkambi and Symdeko and now takes Trikafta, which she describes as life-changing.

But she is also acutely aware that these advances have not reached everyone.

“While CFTR modulators have been life-changing for many people, they are not a cure,” Lauren says.

Many people with CF are still unable to access these treatments because of their genetic mutations, while others continue to experience significant health challenges despite treatment.

That is why Lauren believes we cannot stop here.

She is excited by the potential of areas such as cell and gene therapies and AI, and wonders what could be possible if research continues to push the boundaries of what we know about CF.

“If we can achieve something as transformative as [Trikafta], what is stopping us from achieving even more?” she asks.

Finding the light

Living with CF as an adult has brought a different set of challenges.

Lauren balances daily treatments, medications, inhalers, nebulisers, nutrition and exercise alongside work, motherhood and running a household. Even when she appears well, CF is still there in the background, requiring constant planning and energy.

“It can feel relentless,” she says.

But Lauren has learned to look for the light, even when life feels heavy.

Living with CF has taught her not to take things for granted and to appreciate the small, everyday moments that can so easily be overlooked.

“You can’t always choose what happens to you, but you can choose how you respond.”

It is a mindset she hopes to pass on to her children.

Using her voice for change

Advocacy has always been important to Lauren. As a Cure4CF Ambassador, she wants to use her lived experience to help others feel understood and less alone, while also educating the wider community about what it really means to live with CF.

She wants to challenge misconceptions, break down stigma and show the direct impact that research can have on people’s lives.

Her own experience has made one thing particularly clear: progress does not happen by chance.

“It happens when we invest, in research, in innovation, and in the people working tirelessly to turn scientific discoveries into everyday practices.”

For Lauren, the ultimate goal is simple.

“I hope that one day we will be able to say, ‘We’ve done it, we’ve found a cure.’”

Until then, she wants to see effective treatments available to every person with CF, regardless of their genetic mutation, and a future where CF no longer limits the opportunities available to people living with it.

Because, as Lauren puts it:

“Cystic fibrosis is part of me, but it is not all of me.”

We’re incredibly proud to welcome Lauren to the Cure4CF Ambassador family and look forward to sharing her voice, her experience and her hope for a future free from cystic fibrosis.