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How we're accelerating CF research: our new research impact report
Our son, Isaac, was born in 2005 and shortly afterwards was diagnosed with cystic fibrosis. From that moment our lives shifted into a reality we had never imagined. We were overjoyed to meet our beautiful first child, but we hadn’t foreseen the daily drugs, physiotherapy, hospital visits, or the tears that came with blood tests, IV lines, oxygen, and the constant work to keep him well. The joy of new parenthood became entwined with fear, uncertainty, and a crash course in medicine.
In those early years, a cure felt distant. We viewed each treatment as part of a jigsaw that might keep his lungs healthy, while our most hopeful dream – a cure – remained far on the horizon. We followed research closely and fundraised for Cystic Fibrosis Trust, but progress always felt at least five years away. As Isaac grew, his health declined.
Things fundamentally changed in the CF community when CFTR modulators emerged. Although they offered huge promise, we knew immediately they wouldn’t help Isaac because of his rare mutations. As friends celebrated the possibilities, we felt left behind. We worried that once modulators arrived, interest, research and funding for the population with rare mutations would fade.
But research did not slow. Two years ago, everything shifted again: gene therapy trials in CF began. Isaac has since taken part in several of them. To move from treating only symptoms to choosing between potential root cause treatments feels extraordinary.
CF is not only a disease of the lungs. It affects most of Isaac’s organs, including his digestive system, kidneys, liver, pancreas and his fertility. As a child he experienced many gastric issues, but these have gladly lessened over time.
His liver and kidneys are affected because of the aggressive antibiotic treatments that are essential for his lungs. In the pancreas, the enzymes which should be released via a duct to digest food are unable to be, as they are blocked by mucus. In turn this impacts the pancreas’s other job, to regulate sugar levels in the blood and leads to CF diabetes. So alongside research to address the root cause of the disease, more research is urgently needed to address the symptoms and complications of CF throughout the body.
Isaac’s endless humour and stoicism make daily life not just bearable, but joyful. As he grows into adulthood, I navigate life as both parent and carer – never only one or the other. There has never been a question of me not being by his side.
My family, friends, and I have now raised over £110,000 for the Trust, and I’m also proud to serve on the Trust’s Research Grant Review Committee, offering a lay perspective on where funding can have the greatest impact for the CF community. Continued research – and the Trust’s dedication – fuels our growing hope for a future where Isaac can truly live a life unlimited.
Read our 2026 Research Impact report
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