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Nick is 47 years old, recently married and is a big fan of travelling the world, skiing, scuba diving, climbing mountains… Less adrenaline intense hobbies include watching TV and gaming. He was diagnosed with CF at 13 years old, and through his incredible fundraising has raised over £144k for our charity and spoken at numerous events to help others fundraise.
When Emma’s son Arthur was diagnosed with cystic fibrosis (CF), she didn’t know where to turn. But through the support of friends and family, their CF team and Cystic Fibrosis Trust, they found a way to adapt to their ‘new normal’. We spoke to Emma about her advice for other CF parents, raising awareness and her “brave and fearless” little boy.
In November, you told us that your top CF research priority was “What options are available for those not able to take current CFTR modulators (including rarer mutations, not eligible and unable to tolerate)?”. Today we’re excited to announce a new funding partnership with the US based CF charity Emily’s Entourage to develop novel ways to deliver a genetic therapy for CF in the lab. If successful this research could lead to a treatment for everyone with CF in the future.
