Cystic Fibrosis Trust celebrates CF community at 60th anniversary awards ceremony

Professor Alan Smyth 

Alan is a member of Cochrane Cystic Fibrosis group, which is an enthusiastic team of people who are interested in producing high quality systematic reviews of interventions relating to the care of people with CF and to their families. Following a major structural change to the way Cochrane was funded, most UK Cochrane Centres closed. Alan had the vision to keep things going – identifying funders and adapting the organisation. Soon we will have multiple competing therapies which address the basic defect in CF – the only way to choose between these is via impartial, well conducted evidence synthesis. The leadership, energy, and foresight which Alan has demonstrated in continuing Cochrane CF is of huge significance. Working in partnership with Cystic Fibrosis Trust, Alan also spearheaded a recent global project to identify the most important research priorities for people living with CF. This pioneering project raised the profile of the needs of the CF community, ensuring the CF community voice is at the very centre of research funding decisions.

Lorraine Barnes

Lorraine has been a passionate and dedicated fundraiser for Cystic Fibrosis Trust for 20 years. She has organised a multitude of fundraising ventures, from a £1 pin badge, to charity balls and coffee mornings; daredevil activities such as wing-walking and abseiling, and even taking part in a calendar girls style calendar – all in aid of CF. Lorraine isn’t stopping there; she is also hoping to organise 60 fundraisers ahead of her 60th birthday in 2026 for the Trust. 

 Anastasia Grainger

At just seven years old, Anastasia is a tour de force when it comes to fundraising. Her most significant achievement was orchestrating a Halloween party which raised over £3,500, an event which took place just two days after she was discharged from hospital where she had been receiving IV antibiotic treatment. Despite her health challenges, she demonstrated unwavering commitment and determination, ensuring the event was a resounding success. 

Marie Clegg

Marie is an amazing lady who always goes out of her way to put her patients and their families at ease, always making sure they have everything they need. She is kind, helpful, and goes the extra mile to ensure CF treatment is received. Always at the end of a phone, always with a smile and a chat. As one nominator said, ‘She makes me feel like it’s not an actual admission, it’s more homely and I always look forward to seeing Marie.’ 

Yasmin Hussaini

Yasmin is an excellent nurse, she also organises parents’ events, giving up her own time to find sponsorship and activities to bring parents together. She arranges annual education events with guest speakers and CF role models talking about topics that parents might want to find out more about. She puts everyone before herself and expects nothing in return. Simply put by one nominator ‘When I think of outstanding, I think of Yasmin’. 

Rosie Nation

Rosie is a mother to her four-year-old-son Reuben, though Rosie’s efforts extend beyond her role as a parent. She has worked tirelessly to elevate awareness of cystic fibrosis. From sharing her own personal story to actively engaging with the media and collaborating with political representatives. Rosie campaigned relentlessly to challenge NICE’s appraisal process for modulator therapies, compiling evidence for the committee. She ensures that the voices of those affected by CF are not only heard, but respected. 

Tilly Green

Tilly has been raising awareness of CF from an early age. From speaking at her school when she was just 5 or 6, to campaigning for Orkambi and getting her local MP involved, to talking on local radio and in national press. Tilly is a member of the Trust’s Youth Advisory Group (YAG). She loves being a part of the group, talking openly and honestly about her life with CF, and really enjoys making a difference.