Trust shares its vision

News -

Parent and grandparents of people with cystic fibrosis and supporters of the Trust gathered in London on Tuesday for an update on the Trust’s vision for a life unlimited by cystic fibrosis for everyone born with the condition.

Ed Owen, Chief Executive, introduced the powerful vision for a life unlimited and our strategy for reaching this goal, while Dr Keith Brownlee highlighted the research the Trust is funding, including SRCs and gene-editing.



There was a lot to cover, including upcoming information and support from the Trust in the form of a new parent pack, fertility pack and the ongoing work of the helpline team, as well as a campaign to ensure access to transformational drugs like Orkambi.



Ed said: “We are at a vital moment and one that we as the Trust and we as a CF community need to grasp.



“The revolution in genomics, the explosion of big data and the personalisation of models of healthcare brings with it huge opportunities – and we must harness each of these for cystic fibrosis.”



Finally, Michael Clark, Legacy and In Memory Manager, expressed the Trust’s immense gratitude to all of its supporters, and implored people to take this opportunity to get involved and join the fight for a life unlimited at an exciting and promising time.



If you want to get involved in this mission, you can take part in fundraising, join the Sixty Five Roses club, consider leaving a gift in your will or attend one of the Trust’s upcoming events to find out more:



Glasgow: Wednesday 24 February

Birmingham: Tuesday 1 March

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