Tuesday 15 December 2009

Want to book some great entertainment for your fundraising event?

A fantastic group of singers from Eton College are offering their services to CF Trust fundraisers.

The Incognitos are a close harmony group made up of 9 singers. The group is entirely organised and rehearsed by students, who practise together for over 6 hours each week. This year they are performing on various occasions, from a tour of Japan, to corporate drinks parties around London. The music they perform is often tailored to suit a particular event but they are renowned for their ambitious and imaginative arrangements of pop songs such as Michael Jackson’s ‘Billie Jean’ or Take That’s ‘Patience’. This year they are giving all money raised from their concerts and events to the Cystic Fibrosis Trust.

They are available to sing at any event, please contact d.leigh@etoncollege.org.uk for more information.

Tuesday 1 December 2009

About our committees

We’ve just had the second yearly meetings of our research advisory and medical advisory committees. Each one is a group of expert CF scientists and clinicians who give up their time to provide advice on issues affecting the CF community and to review research currently underway. There is also a person with CF and a parent of someone with CF in each group ensuring we’ve considered everything from the family perspective.

Items discussed included work on CF clinical trials in the UK and in Europe, a review of the work of the UK CF Microbiology Consortium, swine flu and the CF Registry – a clinical database of people with CF in the UK.

A lot of the info discussed will make it into CF Today at some point so keep your eyes peeled.

Friday 20 November 2009

Christmas is coming!

Well the nights are really drawing in now and it's getting colder....which means only one thing, it must be nearly Christmas!

Christmas is a time for eating lots, watching rubbish telly and staying indoors, so all the more reason why you should get in a bit of exercise before the big day and help the CF Trust at the same time.

We are holding lots of Santa Fun Runs all over the country starting next weekend. Everyone who takes part gets a free Santa suit and it really is a great way to get into the festive spirit.

Sign up online now www.cftrust.org.uk/help/events or contact our Events Team for an entry form - 0845 859 1100 or events@cftrust.org.uk

Monday 2 November 2009


A charity single and album are set to raise vital funds for the Cystic Fibrosis Trust.

The project has been masterminded by manager and promoter Lee Robson from Rochdale, who wanted to do something for the charity after meeting one of its young ambassadors who has Cystic Fibrosis, Kelli Gallacher. Cystic Fibrosis (CF) is one of the UK’s most common, life-threatening inherited diseases and claims three lives a week in the UK.

Lee said “I decided I wanted to do a single and album to raise money for the charity and have managed to get unsigned artists and bands from all over the world to take part. All songs on the album have been written by the artists themselves or by writers they work with.”

Full details can be found at http://www.faithalbumlaunch.co.uk/

All money raised from the sale of the single and album will help fund research into treating and curing CF. It will also help provide support, advice and appropriate clinical care to the 8,000 babies, children and young adults with Cystic Fibrosis in the UK.

Tuesday 6 October 2009

Another person on the plinth!

Lois-Jane Thompson is going to be on the fourth plinth in Trafalgar Square this Friday at 8am to raise awareness and funds for the CF Trust. She is looking for volunteers to shake CF Trust collection boxes and buckets whilst she is on the plinth - if you are interested please find her in facebook and send her a message!

Thursday 1 October 2009

Big Bounce for the CF Trust

Students and staff at Salford City College, Eccles Centre honed their bouncing skills on Friday 18th September, when they took part in a Big Bounce event which raised over £500 for the CF Trust.

Sarah Haynes, Head of Studies at the Eccles Centre, organised the event as her niece, 11 year old Eleanor Geraghty, has Cystic Fibrosis (CF) and Sarah herself is a carrier of the gene that causes CF.

Well done to all who took part - looks like it was a fun day!

Wednesday 19 August 2009

Oxygen on flights

Many of you will already know that we are supporting a campaign by several other charities to end oxygen charges for people with medical condition who want to fly.

At present British Airways, Virgin, Emirates, Thomson and Cathay Pacific do not charge people for oxygen and Easyjet and Flybe allow people to bring their own oxygen on board. However many other airlines are still charging.

If you have had some experience with this please get in touch by emailing gfoy@cftrust.org.uk - we would love to hear your story.

Tuesday 4 August 2009

Get your running shoes on for the CF Trust

We still have charity places available for this year's New York City Marathon and the Royal Parks Half Marathon.

The New York City Marathon is an amazing experience for any runner, allowing you to take in all the sights and sounds of the Big Apple including the Statue of Liberty, the Empire State Building and Central Park. It's the world's biggest marathon with around 40,000 runners and always attracts millions of supporters. The event takes place on Sunday 1st November.

Closer to home, the Royal Parks Half Marathon, a relatively new event, offers you the chance to see London's parks at one of the most beautiful times of the year - autumn. The run takes in four Royal Parks and offers spectacular views of Buckingham Palace, the Houses of Parliament, the London Eye, Marble Arch and the Royal Albert Hall. This event is on Sunday 11 October.

Go to http://www.cftrust.org.uk/help/events/ for more info but be quick - we only have guaranteed charity places available until 14 August.

Thursday 30 July 2009

Water Baby Eva

Well done to Eva Higgins, a little person with CF, who has just got her 5 metre swimming badge at only 2 years 1 month old! This means she can swim 5 metres with no aids - very impressive considering she has missed a lot of lessons through being ill and having IVs during the past year.

Eva is pictured above with her swimming instructor.

Tuesday 28 July 2009

Jordy Pordy at Edinburgh Fringe

A new play, Jordy Pordy: Taking the Bull by the Horns, will debut at the Edinburgh Fringe Festival this August.

The play is an autobiographical one-man show written and performed by Jordan Herskowitz. The play tells the story of Herskowitz's life as a middle child of two brothers diagnosed with cystic fibrosis, being a Jewish individual growing up in Texas, and performing as a professional mascot.

The show is on from 6-30 August and anyone with a CF connection can buy group tickets at a discounted rate for the opening week only. Tickets for ten or more individuals are £6 pounds. Regular price tickets are £8, £7 concessions.

To book call the Edinburgh Fringe Office at 0131 226 0000 and for more info visit http://www.jordypordy.com/

Friday 24 July 2009

Any budding Spielbergs out there?

We are looking for lots of videos to favourite on our YouTube channel - anything about day to day life with CF.

You can upload films from your video camera or mobile to YouTube then just send the link to gfoy@cftrust.org.uk . It's quite easy so give it a go if you haven't done it before.

Have a look at some of the videos we've favourited already http://www.youtube.com/cftrust

We look forward to seeing your handiwork, have a good weekend everyone and get filming!

Wednesday 15 July 2009

Mad people on the fourth plinth

We're loving all the people taking part in the One and Other project. Every hour, 24 hours a day for 100 days, a different person will step up to the fourth plinth in Trafalgar Square and help make a living portrait of the UK.

Of course it has been a great opportunity for charity fundraisers to get up there and raise a few bob by doing something silly...step forward Susan Linnell who spent an hour on the fourth plinth at 1am this morning dressed as a rabbit whilst bouncing on a spacehopper! She has raised £765 for the CF Trust so far so well done Susan!

You can watch her in action here http://www.oneandother.co.uk/participants/susan and sponsor her here http://www.justgiving.com/susanlinnell/

If you are taking part let us know by emailing gfoy@cftrust.org.uk

Monday 13 July 2009

Lunar World Record

An incredibly ambitious project to create the largest ground-based mosaic image of the Moon, and enter the Guinness Book of Records will raise vital funds for the Cystic Fibrosis Trust.

A team of people, comprising of some of the world's foremost astro imagers, gathered at the home of Sir Patrick Moore, a long-term supporter of the Trust, in April this year. Using specialist astronomy cameras with telescopes and special software to compile and mosaic the frames, they have created an image which has eclipsed any other so far taken of the Moon.

All proceeds from the use of the final image, which is already being mooted for use at various planetariums around the UK, and is available to view and purchase at http://www.lunarworldrecord.com/, will be donated to the CF Trust.

Monday 6 July 2009


We still have some charity places available for this year’s BUPA Great North Run on Sunday 20 September.

The BUPA Great North Run is the world's biggest half marathon. Every year thousands of runners take to the streets offering a fantastic atmosphere.

All runners will receive a running vest to wear with pride on the day, a fundraising pack, newsletters, access to our online interactive training zone and an invite to the post-run party complete with masseurs

Charity places are available until this Friday, 10th July. You can find out more by contacting 0845 859 1100 or email events@cftrust.org.uk.

Wednesday 1 July 2009

Well done Alex!

CF Trust fundraiser Alex Crossland was the fastest on two wheels at the Capital to Coast Cycle Challenge for Charity on Sunday 28 June.

The scenic ride ending up in the picturesque seaside town of Hove in East Sussex was organised on behalf of several charities, including Norwood, The Down’s Syndrome Association, The Cystic Fibrosis Trust and Heart’s Have a Heart appeal. More than 1,600 cyclists got in gear to raise £300,000.

The fastest rider was 18 year old Alex from Haynes near Bedford, who completed the 60 mile route from Esher in three hours and 10 minutes. Alex, who was sponsored by Virgin Active, was riding on behalf of the Cystic Fibrosis Trust in memory of his older sister Victoria, who suffered from the condition and died last year at the age of 23.

He said he enjoyed the ride, particularly the first half, but added: “Bedfordshire doesn’t have a lot of hills so Devil’s Dyke was a nightmare.” The former Bedford School pupil, who lost about four stone during his eight-month training, is now set to raise an incredible £1,500.

Riders chose from three different routes this year: a 60 mile ride from Esher College in Surrey; a gentler 30 mile ride beginning at Haywards Heath in West Sussex; and a new 60 mile Hove to Hove circular route, starting and finishing on Kings Lawns at the bottom of Grand Avenue. They enjoyed the blazing sunshine and were refreshed by the ample food and drink provided by the organisers along the route to help them cope with the tough cycling challenge.
The event was endorsed by well-known personalities, including Olympic cycling gold medallists Rebecca Romero and Bradley Wiggins, TV presenter Fern Britton and Mayor of London Boris Johnson.

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 jali@cftrust.org.uk

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 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

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!

Wednesday 27 May 2009

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

Wednesday 20 May 2009

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.

Monday 11 May 2009

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.

Friday 8 May 2009

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.

Friday 1 May 2009

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.

Thursday 30 April 2009

Big Bounce Humber Bridge

On Sunday, whilst lots of people were running the marathon, others were taking part in a different sort of fundraiser - a sponsored mile long space hopper bounce across the Humber Bridge.

You can see the bouncers in action here http://tinyurl.com/c3wshb

Friday 24 April 2009

Good luck to all our runners

Good luck to all of our intrepid runners who are taking part in the London Marathon and Tresco Marathon this weekend. Thanks very much for all the months of training, sweat and pain and for raising money for the CF Trust.
See you at the finish line!

Thursday 23 April 2009

Come on Yorkshire!

We're looking for people to take part in our annual running event, the Yorkshire 10k, at Newby Hall near Ripon.

The event, a trail and off road race around Newby Hall Estate, is now in its fifth year and raises vital funds for gene therapy research.

There's also a 2k and pupils from Skelton and Newby Hall Primary School have already signed up to take part.

Schools who enter 4 or more children can win the schools trophy, which is given to the team with the fastest combined time.

Friday 17 April 2009

The Observer this Sunday

Check out The Observer magazine on Sunday for an article on gene therapy for CF.

Have a great weekend!

Wednesday 15 April 2009

Shameless star takes on the GMR!

Actor Ciaran Griffiths (Mickey from Shameless) is taking on the BUPA Great Manchester Run for the CF Trust on Sunday 17 May.

The run, which starts and finishes in Manchester city centre, is one of the world’s fastest growing running events and 33,000 runners took part last year.

Ciaran said ”I’ve been getting into my jogging so I’m quite looking forward to it – and the CF Trust have promised me a massage at the end so that makes it worth my while!”

Tuesday 14 April 2009

Allison in the Daily Mail

Allison John, who has CF and has had four organ transplants, tells her amazing story in the Daily Mail

She also appears in the BBC series Lifegivers, which goes out this week at 9.15am each day.

Well done Allison!

Thursday 9 April 2009

Read more about our victory at Twickenham yesterday!

Our annual charity rugby match at Twickenham was a great success yesterday, raising an amazing £20,000. Rob Andrew, the Rugby Football Union's elite rugby director and former England fly half, Sports Minister Gerry Sutcliffe and CF Trust patron Ben Shephard all took part.

Find out more about the match here.
Check out some of the great photos taken during the day.

Tuesday 7 April 2009

Prescription Charges in Scotland

If you live in Scotland and have to pay for your prescriptions you might be interested to know that the cost of a single prescription item has been lowered from £5 to £4 and the cost of a Prescription Pre-payment Certificate (PPC) has been lowered from £48 to £38 for 12 months and £17 to £13 for four months. Further annual reductions are planned to remove charges altogether by April 1, 2011.

For more info go to www.infoscotland.com/prescriptions

Thursday 2 April 2009

Good Luck Alex!

Musical genius Alex Stobbs, star of last year’s A Boy Called Alex documentary, will be undertaking an amazing challenge on Sunday 5 April when he conducts the Rodolfus Choir performing Bach’s St Matthew Passion.

To find out more go to http://www.stobbs-matthewpassion.co.uk/.

Tuesday 31 March 2009

New booklet on CF and relationships

Cystic Fibrosis and Relationships is a new booklet that has been written by two young women with CF, Jacqueline Didsbury and Emily Thackray. They interviewed about 60 people with CF and the booklet is a collection of real life experiences covering various aspects of relationships, such as when to tell your partner about your CF, moving in together, meeting the parents and starting a family. You can download the booklet from the following page on our website.


Thanks Jacqueline and Emily!

Wednesday 25 March 2009

Well done William!

We recently had a competition to design a Christmas card which will be sold to raise money for the CF Trust.

We had lots of great entries and it was very difficult to choose a winner but we are delighted to announce that four year old William Booth's drawing of a snowman is the winning entry! William didn't write his address on the back of the card so we haven't been able to tell him personally that he won, if his mum or dad are reading this please get in touch with us by emailing jbillingham@cftrust.org.uk

The winning card will be available to buy in the 2009 Christmas catalogue and online from the CF shop later in the year.

Tuesday 24 March 2009

Thanks Scotmid!

We have been chosen as Charity of the Year by the retail group Scotmid. Their 260 stores across Scotland (Scotmid, Morning Noon & Night and Semichem) have all got CF Trust collecting boxes in them now. The staff also plan to hold raffles and will be taking part in sponsored events, so if you live near a Scotmid store, pop in to say "thanks" and put a pound in the tin for us.

We're always on the look out for new partners to work with, so if you think your company could help us by adopting us as their charity, or by matching funds raised by you, why not drop an email to Gemma on gwoodward@cftrust.org.uk who'll be happy to help you.

Tuesday 17 March 2009

Whistling for CF

Lots of our fundraisers do unusual things to raise money for us and Johanna Branston is no exception. She will be taking part in the World Whistling Championships this April and you can see her whistling at the link below!


Friday 13 March 2009

Taking on Kilimanjaro

Did anyone see the Big Red Nose Climb documentary last night? What an amazing and challenging experience, well done to all the celebs who took part especially our patron Ben Shephard.

If you were inspired by the celebs last night remember you can sign up to take on Kilimanjaro for the CF Trust, like our fundraising manager for Yorkshire Tina Davis-Johnstone who is tackling Kili in August.

To sponsor Tina go to www.justgiving.com/tinadavis5

To find out more about our Kilimanjaro Trek go to

Monday 9 March 2009

Check out Kate in Tesco magazine

If you are a Tesco customer pick up a copy of their free magazine next time you are doing the weekly shop - the cover star is Kate Smith one of our ambassadors.

Here's some more info

Doesn't she look gorgeous? Well done Kate and thank you!

Thursday 5 March 2009

Prescription Charges

The British Medical Association has called on the government to make prescription charges free for everyone in England.

The Department of Health is currently reviewing the list of long-term conditions that are exempt from prescription charges. In its submission to the review, the BMA says that extending exemptions without a fundamental overhaul of the whole system will simply “create a new set of arbitrary ‘winners’ and ‘losers’”.

What do you think about this issue? Should everyone get free prescriptions? Or just those with long-term conditions?

Answer our poll here

Tuesday 3 March 2009

Prima magazine

Thanks to Mandy Kloppers, a pwcf who shared her story with Prima magazine this month. In shops now!

Friday 27 February 2009

Volunteers wanted for Edinburgh Marathon

The organisers of the Edinburgh Marathon are looking for lots of volunteers to help them at this year's event on Sunday May 31st 2009.

Volunteers receive a t-shirt, lunch vouchers and an invite to the post-race barbecue. Every volunteer earns a donation of £15 for their chosen charity. All volunteers also receive an Edinburgh Marathon badge, bronze, silver or gold.

You can also sign up as a team of volunteers. To find out more please go to http://www.edinburgh-marathon.com/?Contracts

Thursday 26 February 2009

First dose of gene therapy given

Yesterday the first dose of the gene therapy product was given as part of the pilot study. The pilot study involves 27 people with CF taking one dose each and following successful results of the pilot study, we will move towards the major multi-dose clinical trial. It has taken a great deal of time, effort and money on behalf of us all at the CF Trust, the UK CF Gene Therapy Consortium and the CF community to get this far, so although there is still a great deal of work to be done, we are very excited to reach this stage.

Interesting news story about CF

You may have seen in the news today some interesting research about CF. Scientists have discovered that small differences in a gene called IFRD1 in people with CF can relate to the severity of lung disease in the patient.

Here's some more info

We asked the scientists at the UK CF Gene Therapy Consortium what they thought about this and here's what they said.

"It has been suspected for a long time that the severity of cystic fibrosis (CF) lung disease is influenced by genes other than CFTR (the "CF gene") in CF patients. By examining the genetic make-up of a large group of patients, Gu and colleagues have identified IFRD1 as having a
significant effect on lung disease: some forms of the gene are correlated with lower severity and other forms with higher severity. Interestingly, IFRD1 affects the function of neutrophils, cells of the immune system which are responsible for much of the damage seen in the lungs of patients.

The result is important because it confirms the importance of other genes in modulating CF lung disease and implies that therapies aimed at modulating neutrophil function would have a beneficial effect in CF. Such therapies could eventually become a useful addition to the existing
range of symptomatic therapies available. However, therapies aimed at correcting the basic defect in CF still offer the best prospect of providing long-term clinical benefit."

Thursday 19 February 2009

Lynsey's summer of runs!

Our very own Expert Patient Adviser Lynsey Morton will this summer be taking on THREE runs to raise funds for the CF Trust. The first, in May, will be the CFT Yorkshire 10k, followed by the Humber Half Marathon in June and then the York 10k in August.

Lynsey and husband Daniel ran their first ever 10k last year and enjoyed it so much that they decided to go one step further this year and run a half marathon too.

The keen pair have already started training, despite the recent snowy weather, but would really appreciate the support of the CF community to spur them on. If you'd like to sponsor Lynsey and Daniel, visit www.justgiving.com/lynseyanddaniel.

Good luck to both of you!!

P.S If Lynsey has inspired you to take part in a run yourself, have a look at our website to find out what's on your area.

Wednesday 18 February 2009

A night of soul for the CF Trust

We're really pleased that we've been chosen as the official charity of the 2009 Ipswich and Suffolk Press Ball.

Last year this event raised a fantastic £15,000 for the CF Trust.

The event takes place on 19 June at the Hotel Elizabeth in Ipswich and the theme is Soul. The band 'Still Drifting' including the original Ray Lewis from the Drifters will provide entertainment.

If you are interested in buying a table contact Bridget York on 0208 429 7530 or email bridget.york@entireaffair.com

Tuesday 17 February 2009

CF gene therapy in the news

Some of you may have seen the story in the news about research into using a 'super' virus in gene therapy for CF.

Here's our response to this story.

A spokesperson from the UK Cystic Fibrosis Gene Therapy Consortium said

“The techniques used in this research are innovative, but more work is needed before this could be translated into clinical benefit for people with CF. The virus only carries a shortened version of the CF gene and it remains to be seen if it has the same function as the whole gene; the long-term treatment of a CF patient would require repeat administration of the virus which is usually not feasible as the body develops immune responses against the virus; and although the results are positive in human lung tissue in a laboratory, it remains to be seen if it would work in the patient.

The UK CF Gene Therapy Consortium funded by the Cystic Fibrosis Trust is currently trialling gene therapy in patients for clinical benefit. Our Wave 1 gene therapy research is using a liposome to get the gene therapy product into the body. Following this year's pilot study in humans, we anticipate going to a major multi-dose clinical trial in 2010.”

Monday 16 February 2009

Norwich City All Stars show support for CF Trust

Former Canaries Jeremy Goss, Darren Eadie and Robert Fleck will be reunited at a charity football match for the CF Trust and the Prostate Cancer Charity. The Norwich City Allstars team will take on Saham Toney FC in the Stephen Gower Memorial Cup.

The event has been organised by two London Marathon runners to help boost their sponsorship and will take place on Sunday 29th March at Saham Toney Playing Field in Saham Toney, Watton, Norfolk.

Gates open at 12 noon and there'll be a sporting memorabilia auction, a raffle and bouncy castles for the children.

For more information call Gordon Pitcher on 07909 544580.

Friday 13 February 2009

Sign up to the organ donor register this Valentine's Day

While many will wait in anticipation of an anonymous message landing on their doormat this February 14th, thousands of people in the UK are hoping for a message of a different kind, the news that they will get their life-saving transplant.

NHS Blood and Transplant (NHSBT) is calling for people to make Valentine’s Day the day they join the NHS Organ Donor Register (ODR) and send a message of hope to those who are in need.

While 90% of people in the UK say that they support organ donation in principle, only 26% - just over a quarter of the population - have actually joined the NHS Organ Donor Register. More than 3,000 organ transplants were carried out in the UK last year, but with almost 8,000 people currently waiting, the need for more donated organs is greater than ever

Monday 9 February 2009

Bobby Dazzler

Comedian and Eastenders star Bobby Davro will be entertaining guests at the Black and White Ball for Cystic Fibrosis. The event will be also attended by John Cameron and other BBC celebs from Cash In The Attic.

It's being held at the Portsmouth Marriott Hotel on 18th April. Tickets are £80 which includes a four course meal with wine.

For more info contact Heather Emery on 07818 088332.

Thursday 5 February 2009

Do you know someone who deserves an award?

Award Winner Caroline Shorthouse with Ben Shephard and Gail Porter
Nominations are now open for this year's Breathing Life Awards. This star-studded ceremony happens annually in London and recognises the achievements of those with living with CF.
It is always such a difficult decision for the judges, as each one of the stories is moving and each one of the people nominated deserve an award. Last date for entry is Friday 27 February, so if you know someone special with CF you want to nominate, make this the year you do it. The Awards are open to anyone with CF living in the UK over the age of five. Click here to find out more.

Wednesday 4 February 2009

Christmas card competition!

We are looking for budding artists under the age of 14 to design a special Christmas card to go in our catalogue for 2009. Yes yes we know it seems ages til next Christmas but we like to be organised!

The design can be any Christmas theme you choose and the more colourful and brighter, the better. Please send your designs in to Christmas Card Designs, c/o Jo Billingham, Cystic Fibrosis Trust, 11 London Road, Bromley, Kent BR1 1BY by Friday 27 February.

We look forward to seeing your designs!

Tuesday 3 February 2009

Footballers take on abseil challenge!

Rochdale AFC Youth Team will be making a leap of faith on Good Friday when they take part in a 90 ft abseil down the Canal Mill at Botany Bay, Chorley to raise vital funds for the CF Trust. The team is taking part because coach Chris Beech has a son with CF, 6 year old Brandon.

Details of how to sponsor the team are available from Rochdale AFC’s press office by telephone on 0844 826 1907 or by email at mike.brookes@rochdaleafc.co.uk.

If you would like to take part in the abseil, which takes place on Good Friday and Easter Saturday (10-11 April) please call 0845 859 1100, sign up online at http://www.cftrust.org.uk/ or email events@cftrust.org.uk. All participants must pledge to raise a minimum of £75 in sponsorship which includes a £10 deposit payable when booking.

Monday 2 February 2009

Snowed in!

Hi everyone

I'm afraid head office is closed today due to the snow - no-one can get in!! Some people will be working at home and of course it's business as usual for our regional staff, but we hope the rest of us will be back to normal tomorrow.

Keep warm!

Friday 30 January 2009

Kelli on Noel's HQ

One of our junior ambassadors, Kelli Gallacher from Dunbartonshire, gets a special surprise this Saturday on Noel's HQ. The programme starts at 7.30pm. Check out the link below for some more info about the show http://sky1.sky.com/show/noels-hq

Tuesday 27 January 2009

Pet Corner

One of the CF Trust’s top regional staff members, Ollie the dog, is out of action with a bad back. Poor Ollie, who lives with Senior Fundraising Manager Nikki Samsa, has a slipped disc. Get well soon Ollie xx

Monday 26 January 2009

GI Geoff

Well done to Geoff Lake who raised over £500 for us when took part in the British Military Fitness London 5k in October. A fundraising event not for the faint-hearted it involved a 3k run, a 2k assault course and lots of mud.

Geoff is married to Emma who works as one of our Expert Patient Advisers and was cheering him on from the sidelines.

Thursday 22 January 2009

Record number sign up to organ donor register

You've probably seen in the news today that the number of people on the organ donor register in the UK has hit a record 16 million, meeting a government target of doubling 2001's numbers a year early.

We think it's fantastic that so many people are now thinking and talking about organ donation, and time will tell whether this will have an impact on the current rate of transplantation in the UK. We believe that more people will get their life-saving transplant when the recommendations of the Organ Donation Taskforce to increase the number of donor coordinators who work with bereaved families and the number of specialists who retrieve organs, begin to take effect.

If you're not on the organ donation list you can sign up here

Did you know that you are more likely to need a transplant than become a donor?

Monday 19 January 2009

It's not too late to get your flu jab!

If you have CF and haven't had your flu jab yet this winter it's not too late! With lots of nasty strains of flu doing the rounds at the moment it's important for you to protect yourself as much as possible.

For more info contact your GP practice, visit the NHS website or call NHS Direct on 0845 4647.

Thursday 15 January 2009

Katie takes on Tresco!

Never let it be said that we don't practice what we preach here at the CF Trust. Our Events Manager, Katie Burr (pictured above), is putting her money where her mouth is this April when she takes on the 2009 Tresco Marathon with 130 other runners to raise money for the CF Trust.

The event takes place on Tresco, one of the Isles of Scilly on the same day as the London Marathon. The island is stunning with gorgeous beaches and the hospitality of the islanders is legendary - they all get involved with organising the event and making sure the runners are well looked after.

Katie says "I had such a good time when I worked at the event last year that I was determined to go back this year - so I took the rather drastic measure of signing up to run! This is my first marathon, which will be quite a challenge given the four hills on each of the 7 1/2 laps of the island!"

Katie is aiming to run the marathon in under 4 hours - we'll let you know how she gets on!

To sponsor Katie www.justgiving.com/katieburrtresco

For more info on the Tresco Marathon visit http://www.cftrust.org.uk/help/events/tresco

Wednesday 14 January 2009

If you live in Edinburgh read on....

Wanted – Edinburgh family to take part in BBC programme
Hi everyone

The BBC are looking for a family with a CF link in Edinburgh to take part in the new series of Trash for Cash. It will be an opportunity to educate their viewers about CF, whilst clearing your house out and making some money for yourself and the CF Trust at the same time.

The idea is that you have a team of experts show you how to turn your junk into something useful.

They are looking for a family who have a cluttered house full of useless bits and bobs. Their team of experts will help you recycle, refurbish and repair your clutter, and then sell some of it on to raise some cash to share between your family and the CF Trust.

They would like to speak to potential families on 19th January and will be filming on 30th January.

If you would be interested please contact me gfoy@cftrust.org.uk


Press Officer
Cystic Fibrosis Trust

Thursday 8 January 2009

Your magazine needs you!

Later this year, we will be relaunching CF Today with a fresh, new look. Before we do this, we want to get lots of feedback from the CF community to find out what you would like to see in see in your magazine. We really need your help to produce a fantastic magazine that will both inform and inspire its readers. What do you like and dislike about the current CF Today (we can send you some back copies if you need to refresh your memory – or have a look online), what kind of articles would you like to see more of, what do you think of the design and layout? If you’d like to take part in our readership survey, please contact Jacqueline Ali -jali@cftrust.org.uk. You can either fill in a survey online or if you’d prefer we can phone you up for an informal chat. The survey will run until the end of March, so please get in touch as soon as possible and give us your views!

Tuesday 6 January 2009

Brrr it's cold outside

It's a bit chilly isn't it? Here at CF Trust head office we were all sat typing away in our coats and gloves yesterday but thankfully it's warmed up a bit today.

On the subject of cold weather we are doing a bit of research at the moment to find out if people with CF are managing to keep their homes warm and pay their heating bills.

Please do fill in our survey at


Thanks all!

Welcome to the new blog of the CF Trust - we hope you enjoy reading it.