Friday 28 June 2013

CF Week 2013: Ed's Blog

Cystic Fibrosis Trust CEO Ed Owen looks back on an incredible week raising funds and awareness for cystic fibrosis, and the controversial but critical subject of transplantation.

We're into Day 5 of CF Week 2013 and together we've been making a real impact across the UK, which has only been possible because of our amazing supporters. 

Thank you to everyone who has supported our transplant campaign by speaking so eloquently about the difference a transplant makes. By sharing your stories you've enabled us to raise awareness of the issues surrounding transplantation in every BBC and ITV region.

Transplantation is now firmly established as a health concern within the media, at a time when there is immense competition for space and airtime. In many of the media interviews journalists asked about the crucial issue of the shortage of organ donors.

This week we have also been raising awareness of the issues with politicians across the UK, helped by parents and relatives affected by cystic fibrosis, and clinicians.

We met the Welsh Health Minister, Mark Drakeford, during the week to discuss transplantation policy. The Welsh Government is currently considering moving towards a soft opt-out system of organ donation.

And finally, a massive thank-you to everyone who has been fundraising, raising thousands of pounds for the Trust. We've been posting your photos and highlighting your CF Week activities on Facebook, and we really appreciate all your support. We are fortunate to have such a dedicated and committed community of fundraisers who turn out time and again to support our vital work. We can't achieve anything without you, and we are truly grateful to you all.

You can learn more about the human side of transplantation from the films and stories some of our supporters have shared for CF Week.


  1. I cant stop my self from commenting on this blog. I gone through this post and this post is really amazing and informative. I am gonne share this post on facebook and on my following site as well:

    Kamagra Jelly

  2. i absolutely agree with the concept of positive attitude n thinking,which is the ultimate thing which matters in solving ,majority of issues in life on personal n professional front,grt article,well written n well presented!!

    Hair Loss Treatment

  3. Hi, my name is Martha and I am currently writing a 5000 word essay on living with CF, I hope this isn't too forward of me but and I'm really interested in getting people doing just that to answer a couple of questions for me.
    I have a survey at: and it would be super great. All the questions are completely optional and confidential, and there is a full disclaimer on the first page of the survey before answering any questions.
    I would love for you to be able to help me, no worries if not! Any questions direct them to my face:

    Thanks so much in advance! :)