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 www.lunguk.org/media-and-campaigning/campaigns/travelling_with_oxygen.htm

Click here to email your MP about this issue http://tinyurl.com/md48jq

Click here to read a survey of 22 airlines by Pulmonary Hypertension Association UK conducted Spring 2008 http://www.phassociation.uk.com/living_with_ph/travel.asp

If you have recently had to pay to use oxygen on a flight please email us with more information gfoy@cftrust.org.uk and jjones@cftrust.org.uk

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!

Fundraisers conquer Hadrian's Wall

Very many congratulations to Julian Sheahan and friends Michael Crouch, Malcolm Croker and David Sharland who walked the course of Hadrian’s Wall earlier this month to raise money for the Trust.

The challenge started in Wallsend in Tyne and Wear and they ended up in Bowness-on-Solway in Cumbria five days later having walked 84 miles in total.

The team were inspired to complete the challenge as Julian’s 6 year old twins Elizabeth and William have CF. They have raised over £16,000 in total, making all those blisters worthwhile!

You can donate at http://www.justgiving.com/juliansheahan1

MPs are good sports at charity football match!

A team of MPs drew 7-7 against some stiff competition yesterday at Stamford Bridge…. thanks to a hattrick from Andy Burnham and a little help from footballing hero Gus Poyet.

The UK Parliamentary Football Club took on a team of celebs and ex-pros including Angus Deayton, DJ Spoony and athlete Darren Campbell but were blessed with good fortune when Andy Burnham scored three goals in the second half and Gus Poyet defected from the other side to score two goals for the losing team.

A spectator said: “The MPs were losing 4-1 at the end of the first half so Gus Poyet decided to swap sides and lend them a hand. Gus and Andy Burnham were a bit of a dream team in the end scoring five goals between them. The final score was a great result for the MPs.”

The Nicky’s Whisper Challenge Trophy Football Match is sponsored by National Grid. The teams play for the trophy in memory of Nicky West, who had CF and was a tireless ambassador for the Cystic Fibrosis Trust. Chelsea FC kindly donated the use of their ground for the match.

Sainsbury's charity of the year nomination

Hi all,

Sainsbury's stores are taking nominations for a charity to support over the next year. Each shop will choose its own charity.

We would be really grateful you could nominate the CF Trust in your local sainsbury's and ask friends and family to do the same. They should have small black nomination slips that you just need to fill in and post in the ballot box in store.

The closing date for nominations is 26th May.

New data shows future is brighter for CF patients

We’re pleased to let you know, just in time for CF Fundraising Week, about new information from our CF Registry. Data on the Registry is collected from patients at over 100 specialist CF centres and clinics throughout the UK.

Results show that median predicted survival has increased from 31 years to 35.2 years. There are now more adults living with CF; 56.7% percent of those in the Registry are over 16 years of age compared with 51.4% in 2004. Encouragingly 73% of adults with CF reported they are currently working or studying.

Rosie Barnes, Chief Executive of the Cystic Fibrosis Trust said: “We have invested a lot of time and money developing the UK CF Registry, and are pleased to see that people with CF are living full, varied and longer lives. However although median predicted survival has increased to 35 years, with many adults living into their 40s, 50s and even beyond, there are still children, teenagers and young adults dying from CF at a young age. Our work to improve clinical care and research into treating and curing CF continues to give better quality and length of life to those with CF.”

Read the full report and the press release at www.cftrust.org.uk.

Good luck in the Belfast Marathon!

We would like to wish all our runners in the Belfast Marathon the best of luck for Monday.

Click here to read more about one of our running teams taking part - Ciaran's Flyers.
http://www.belfastcitymarathon.com/news/default.asp?ID=24&itemId=10&topicId=&va=0