Monday 22 June 2009

Your opinions on a CF Trust DVD for children

We’ve had an amazing response on the message boards to the idea of a DVD for children and we’re posting here in case anyone hasn’t seen it.

We plan to produce a new DVD for children explaining Cystic Fibrosis. We would like to get lots of feedback from the CF community before we begin production to ensure that the DVD is appropriate and useful.

The kind of things we would like to find out are: what age your child/children started asking about CF, what sort of questions they ask, are there any questions siblings and friends ask, what are the most difficult questions to answer, and any other things you feel are relevant.

We would also like to hear about what kind of format you think would work best eg cartoons/comic strips vs real people, and whether you think this would be a useful resource overall.

We envisage that the DVD will be for children aged five and up, but again this will depend on the feedback we receive.

Please could you email any comments or suggestions to Jacqueline in the Communications Team on

We will also want to show the DVD to children with CF at various stages of the production process so if you think your child might like to be involved in this, please let me know.

We look forward to your feedback!

Tuesday 9 June 2009

Yorkshire Three Peaks Challenge

Well done to the group of Cystic Fibrosis Trust supporters who braved the weather conditions this weekend and took on the Yorkshire Three Peaks Challenge in the stunning Yorkshire Dales.

The gruelling 26-mile route took them over 3 of the county’s highest summits – Pen-y-Ghent, Whernside and Ingleborough. That’s about a mile of ascent!

Despite horizontal sleet on top of the first peak and very strong winds on the second, group morale remained high and everybody did a fantastic job and raised lots of money in the process. It is estimated that the event will have raised over £8,000 for the CF Trust.

To see some photos from the day, head over to our Facebook gallery. For a peek at some of the other Treks coming up around the UK this summer please see our website.

Monday 8 June 2009

BLF campaign to end oxygen charges on flights

The CF Trust is supporting a campaign by the British Lung Foundation, Pulmonary Hypertension Association UK and Muscular Dystrophy Campaign to end additional changes for people travelling with oxygen and to ensure that all airlines offer the same level of service to people with a lung condition.

Find out more from the British Lung Foundation website

Click here to email your MP about this issue

Click here to read a survey of 22 airlines by Pulmonary Hypertension Association UK conducted Spring 2008

If you have recently had to pay to use oxygen on a flight please email us with more information and

Tuesday 2 June 2009

Breathing Life Awards

Hi everyone

Well our annual awards ceremony, the Breathing Life Awards, took place last Thursday and a great time was had by all. There were some fantastic nominees across the categories which made it very hard for the judges to pick the winners but the results were as follows.

Junior Sport presented by Jake Humphrey and Gail Emms
Cameron Saltmer age 16 from Dover

Artistic Award sponsored presented by Claire Foy and Caroline Feraday
Chris Benbow age 21 from Crewe

Adult Fighting Spirit sponsored by Next presented by Zoe Salmon
Sarah Elsbury age 26 from Norwich (pictured above)

Fundraising Award sponsored by Prospect Distributions Ltd presented by Cheryl Fergison and Adam Croasdell
Jodie Symington age 24 from Hebburn, Tyne and Wear

Academic Life sponsored by Forest Laboratories presented by Jenny Agutter and James Mates
Nigel Brooke age 33 from Besseccar, Doncaster

Adult Sport sponsored by BT presented by Ben Fogle
Chris Goulden age 19 from Poole

Junior Fighting Spirit Award Sponsored by Next presented by Barney Harwood and Gemma Hunt
Sam Roonan age 10 from Havant, Hampshire

Well done to all who were nominated!