Our July Media Roundup

Modulator therapies agreement in Scotland

Permanent access to modulator therapies were agreed in Scotland, after agreements were announced in England, Northern Ireland and Wales in June. These deals follow years of campaigning and offer hope to thousands. You can read the news about Scotland here. We also know though, that while these treatments have transformed the lives of many people with CF, they don’t work for everyone, and are not a cure. 

New diagnosis pack

In July we launched our updated new diagnosis pack which covers many aspects of CF and includes tips and advice from other CF parents – you can find it here.

Creon

We continued our work raising awareness of Creon supply issues that many people affected by CF have been facing. Working with the media, people in the community, and uploading up-to-date resources on our website. You can read our latest blog, where we spoke with clinicians, here.

CFor Yourself

Pick Me Up! Magazine’s latest issue included mention of our podcast, CForYourself. You can listen to season 2 here, and please get in touch if you have suggestions for season 3.

Celebrity football match

Finally, Dorchester Town Football Club were hosts to a charity football match raising money for the Trust and the Lexi May Trust. EastEnders actor, Ricky Groves hosted, while various celebrities took part on the day. Kelly, a member of the community organised the event as her daughter Eden has CF. You can read more about the event in the Dorchester Echo.