QVC and Honora Pearls to support the CF Trust

On Wednesday 22nd December, the shopping channel QVC will be supporting the Cystic Fibrosis Trust.

Their first ever ‘QVC Cares Day’ will feature a selection of top brands who have chosen to support their favourite charities throughout the day and we are thrilled that Honora Pearls are supporting the Cystic Fibrosis Trust.

This is a great opportunity for that bit of last minute Christmas shopping as well as finding out more about our charity work with regular short film clips showing throughout the day. The days’ event will include a standard programming schedule with airtime allocated for the promotion of our charity as well as the opportunity to link on-air sales with an opportunity to donate also.

‘Honora Pearls’ will feature a wonderful range of jewellery products throughout the day and is generously donating 15% of the purchase price to the Cystic Fibrosis Trust.

Find out more on the QVC website

Happy shopping!

Climb every mountain

Everyone has a mental list of things they'd love to do one day and climbing Mount Kilimanjaro is probably top of the list for a lot of people.

Kilimanjaro is the highest freestanding mountain in the world and also the highest mountain on the African continent at 5,896m. Its snow-capped summit rises high above the dusty African plains with huge permanent glaciers flow down from the summit Uhuru Peak.

Sounds amazing doesn't it?

A group of fundraisers recently took on this challenge for us and did a great montage of photos and video from their trip which you can check out on You Tube. If you're inspired to find out more have a look at our website.

Sam completes amazing challenge

Well done to Sam Tomson and team who cycled 1,000 miles from Calais to Barcelona raising over £5,500 for the Cystic Fibrosis Trust.

28 year old Sam, who has CF, cycled with his friends James Cathcart and Mike Tourle and his dad Colin. His mum Lynne drove the route to provide back-up and carry all his medication.

You can find out more and sponsor the team at www.justgiving.com/calbar2010

Well done Allison!

A HUGE congratulations to the lovely Dr Allison John who won a Pride of Britain award this week. Allison is a real inspiration to the CF community, as despite having all her major organs transplanted, she still fulfilled her dream to become a doctor, qualifying this year.

CF Trust awards new research grants

The Cystic Fibrosis Trust has awarded £188,000 to four new research projects aimed at benefiting those with Cystic Fibrosis (CF).

Dr Eshwar Mahenthiralingam and his team at the Cardiff School of Biosciences, Cardiff University have been awarded £45,000 to investigate a bacterial infection called Burkholderia multivorans that causes lung damage, a reduction in lung function and a shortened life expectancy for those with Cystic Fibrosis.

Scientists at Queen’s University, Belfast led by Dr Lorraine Martin have received £50,000 for a research project aimed at investigating dehydration in the lungs of people with Cystic Fibrosis.

Professor Bob Ford at The University of Manchester has been awarded £75,000 for a project aimed at studying the activity of the CFTR protein by understanding how it is built and how it works. CFTR (Cystic Fibrosis transmembrane conductance regulator) is the protein that controls the movement of chloride through the lining of the cells. It is the faulty CFTR that causes the problems in Cystic Fibrosis by not working at all, or not working enough.

A grant has been awarded to scientists at the University of Exeter led by Dr Alan Brown to investigate the relationship between patients who have Cystic Fibrosis-related diabetes, and a particular lung infection called Burkholderia cepacia. This research was funded by the University of Exeter's 2009 studentship campaign in conjunction with an £18,000 research grant from the Cystic Fibrosis Trust.

These four new projects will be running alongside the other research currently funded by the CF Trust into areas such as gene therapy, early detection of lung disease in infants, transplantation, depression in people with CF, inflammation and drug treatments.

From Essex to Paris by bike!

Congratulations to Robert Lee from Rainham, Essex who cycled from Dagenham to Paris raising over £600 for the CF Trust.

Rob originally intended to cycle around the battlefield of The Somme, but after a colleague at work threw him the challenge to cycle to Notre Dame in Paris he accepted the challenge in aid of the Cystic Fibrosis Trust.

His 250 mile journey took a total of 6 days and 13 hours. To prepare for the ride he trained in the local area cycling as far as Southend and back to Rainham.

Well done Robert and thank you!!

Jodie takes on the Kielder Marathon

Congratulations to Jodie Symington, who has CF and took part in the first ever Kielder Marathon around Europe's largest man-made lake in the heart of Northumberland. Here she is with Steve Cram, organiser of the event. Jodie is hanging up her running shoes after taking part in lots of runs for us over the past few years including the very tough Everest Marathon.

Well done Jodie and thank you!

Go Team Kirsteen!

Congratulations to Team Kirsteen who conquered Ben Nevis for us last month and raised a staggering £9,000. Amazing!

Nice tutus!

Congratulations to the team of 15 colleagues from Deloitte who raised over £21,000 by cycling from London to Paris for us last month. Here they are with Andy Abraham from X factor who they met en route!

Well done guys and thank you.

Support our Specialist Nurses

We're supporting the Royal College of Nursing's Frontline First campaign against cuts to nursing jobs and services in the NHS.

The CF Nurse Specialists have such an important role in patients lives and are the glue that holds the CF service together. Without them, it would fall apart. Apart from their identified CF responsibility in outpatient clinics, attending to inpatients, training the ward nurses in CF, and supporting families coping with IVs at home, they fill innumerable gaps. They are the familiar, constant and reassuring presence for families or adults with CF.

Some CF Nurse Specialists have been asked to spend some of their time on general ward duties rather than caring for those with CF. Whilst we appreciate the ongoing need for efficiency
and cost savings, this should never be at the expense of the health of people with Cystic Fibrosis. CF nurses and teams are often already overstretched and reducing nursing time further is a grave concern, particularly as we understand that this has led to a reduction in the number of home visits that some CF nurses are now able to undertake.

We are keen to hear from parents/patients as to whether these issues have affected the care you/your child receives. Please do contact us with your experiences by emailing gmatthews@cftrust.org.uk

You can find out more about Frontline First here and read our post on their blog here

Sam and team take on epic cycle challenge

We get to hear about some fantastic people with CF doing some amazing challenges here at the CF Trust and Sam Tomson is no exception. On the 9th October he'll be starting a 1,200 mile bike ride from Calais in France to Barcelona in Spain, and hopes to raise £10,000 for the CF Trust. Here's more from the man himself....

My name is Sam Tomson, I’m 28 and I have Cystic Fibrosis. I am very lucky to be able to even consider undertaking a challenge of this nature, which will involve cycling about 100 miles a day for 2 weeks. My lungs are colonised with Pseudomonas, but I manage to keep up a good lung function with lots of exercise and a focus on keeping my chest clear.

A few years ago I cycled just over 1,000 miles from Land’s End to John O’Groats and really enjoyed the experience of seeing England, Wales and Scotland in its purest form, and the immense satisfaction of seeing our progress on the map! The daily routine for the upcoming trip will be similarly gruelling: wake up early and try to stuff down as much breakfast as possible, do my medications and hit the road for a 7 hour or so day of cycling. Throughout the day my biggest challenge is staying hydrated and keeping my energy reserves up, so constant banana, cereal bar, jelly babies and glucose drinks action! Yes, there will be days I’ll be feeling low on energy or struggling to keep a big meal down while out cycling, but I know I’ll enjoy it and will be thinking of all the money we’ve raised. With my parents driving the route to provide back-up and carry all my medication, and my two team mates forging ahead and keeping all of our spirits up, I know I’ll complete the trip.

The link to sponsor me and the team, or share with someone else is www.justgiving.com/calbar2010. We’re quite a way behind our target so every little helps and those extra £ will help inspire us to keep those legs pumping up and down and up and down….

Thanks Sam and good luck!

Team Racy Knickers hit the road!

Fundraisers Nicole Taylor, Sarah Kinloch and Carolyn McCall are preparing to embark on the adventure of a lifetime this September.

The girls, who have several friends with CF, will be driving from Calais to Split in Croatia in an organised car rally – a journey covering over 2000 kilometres.

Nicole said "This may not be an unusual leisure activity for some people. But for us 3 females who know very little about cars, this is a huge personal challenge to not only get to the finish line in Split but also get our car ready for the starting line!

There's also one other 'small' issue - the rules of the rally state that you must buy a car for under £150. So thankfully, we managed to source one from a friend for the grand sum of £0.43 - and a case of beer!"

You can sponsor the team here and follow their adventures on their blog

Southampton lads take on 980 mile cycle for the CF Trust

Southampton man Dan Doherty will be raising vital funds for the Cystic Fibrosis Trust this August by cycling from John O’Groats to Lands End.

29 year old Dan, who works for the engineering consultancy Mott MacDonald as an acoustic engineer, has chosen to raise money for the Cystic Fibrosis Trust because his younger brother Ben died of CF in 2008. He is taking part with three friends, Craig Bremner who also works for Mott MacDonald and his university friend Thomas Spenkuch. The team will cycle 100 miles a day for 10 days and will be riding without a support vehicle. Dan said “We are all avid cyclists and have been training but we’ve never cycled anything like the distance we’ll be covering during the challenge. I lost my brother, Ben, to Cystic Fibrosis when he was just 23 years old. We’re hoping to raise money to help fund research into a cure as well as treatment of the symptoms so that CF sufferers have brighter prospects and a longer life expectancy.”

The team leaves John O’ Groats on Sunday 22 August and you can sponsor them at www.justgiving.com/JoGLEforCF

Andrew walks Coast to Coast for the CF Trust

Congratulations to Andrew Horner who recently walked across northern England following Wainwright's Coast to Coast route - 12 days, 190 miles and three National Parks.

Andrew walked in memory of his friend Richard Grannell and has raised £1,250 for the CF Trust. You can find out more on his justgiving page.

Bon voyage to some fundraising friends

A sad farewell or perhaps au revoir to Michael Crouch and Tori Milner who are off on a round the world trip. Mike and Tori are friends of Catherine and Julian Sheahan who have 7 year old twins with CF. From when the children where first diagnosed Mike and Tori pledged to help in any way that they could and they have been great supporters of the CF Trust over the years.

Last year Michael completed Hadrian’s Wall on crutches despite being told by a physio that he was mad to do it. Not only did he finish it with energy and only one crutch, mastering the rugged pathways like a mountain goat, he did his part in raising nearly £20k for the CF Trust! Michael also is one of the top purchasers of the CF Trust's Mr Potato Head pin badges, as he was forced to buy one everytime he was late for a meeting with Julian. Needless to say, he has quite a collection!

To mark their farewell, before embarking on a round the world trip, the couple held a farewell party in aid of the Trust. This involved bowling, dressing up and karaoke, raising a further few thousand pounds. They have been dear friends and a real asset to the Trust, and will be sorely missed.

Sam takes Great Strides for the CF Trust

Well done to 11 year old Sam Haythornthwaite and family who took part in a sponsored walk at Itchen Valley Country Park in Hampshire to raise money for us.

Sam said: "I arrived on a beautiful day at the park with my Mum, Dad, sister and my dog Charlie. After bickering about where we were on the map, we set off to do the 5 kilometres through the country park. The walk took us through various trails past huge totem poles and thick forests. As we were the only family on the walk we were in no rush and eventually finished in 1 hour 40 minutes."

"We were amazed when we found out that altogether we had raised a total of £505 for the CF Trust. I'm very proud of raising this much. It means a lot to me because I have CF and it feels good because I know I've played a small part in helping to find a cure."

Thank you Sam and well done!

Hair today gone tomorrow! (sorry)

A big thank you and well done to Andy Kenny from the West Midlands who cut off all his hair to raise money for us! He's still counting his sponsorship money but it looks as though he's raised around £250 which is great. Well done Andy!

Celebs on Twitter support CF awareness

Fundraiser and mum of two boys with CF Lorraine Barnes has been working hard to raise awareness of CF through her special 'Get it off your chest' T-shirts. She's been tweeting lots of celebs to ask them to wear her t-shirts and the results have been great - Simon Pegg, Ben Shephard, Ali Bastian, Duncan Bannatyne and Mark Hamill aka Luke Skywalker have all lent their support.

Actress Kathryn Drysdale has also backed the campaign by taking the T-shirt with her to celeb parties and last night got Frank Lampard and Boris Becker to pose for her!

Special thanks to mum and fundraiser Alison Dillon who has also been recruiting celebs to wear t-shirts.

You can view the celebs who've sported the t-shirt so far on our facebook gallery and you can also follow Lorraine and the CF Trust on Twitter.

Close to the Edge

Yorkshire man Jonathan Skinner will be raising vital funds for the Cystic Fibrosis Trust this August by motorcycling 4,000 miles around the entire coastline of the British Isles.

27 year old Jonathan embarks on his amazing challenge on August 1st from Harrogate and will be riding 400 miles a day for two weeks camping overnight at stops along the route. He heads north from Harrogate with his first spot in Fife.

Jonathan has chosen to raise money for the Cystic Fibrosis Trust because his aunt has Cystic Fibrosis (CF). He said: “I wanted to do something to raise money for my aunt and I love motorbikes so this seemed like the perfect challenge. I was inspired by Ewan McGregor and Charley Boorman who motorcycled round the world. Although I’m not covering as much ground as them it’s still going to be a tough challenge, and has only been completed by a handful of riders.”

Jonathan has already raised nearly £6,000 for the CF Trust. To find out more and donate go to www.closetotheedgetour.co.uk

Making a difference

Last year we came into contact with some people called See The Difference. They had recently set themselves up as a charity that helps other charities through video fundraising. The idea is simple – you watch video appeals on their website and donate to any causes that you like. The twist is, you then get feedback from the people you helped, so you can see the difference you’ve made.

We decided to ask for money for start-up grants, so we can help more people with CF make a home for themselves and gain independence. A young man called Alex who had received a start-up grant kindly agreed to be filmed, so we made a video about him and his fridge. The website has now been launched and our appeal is, at the time of writing, one of the most viewed. You can watch it – and, of course, donate to it – on the See the Difference website

Go Michael!

We're pretty amazed by 12 year old Michael Turner from Winchester who is planning a 115 mile sponsored walk this May half term and has already raised £17,500 in sponsorship money for the CF Trust. Wow!

Michael, who goes to The Pilgrims’ School in Winchester, is doing the walk because his 4 year old cousin Maddie was diagnosed with Cystic Fibrosis (CF) 18 months ago.

It will take Michael 7 days to complete the walk, leaving Farnham railway station on Friday 28 May and finishing at Canterbury Cathedral on Thursday 3 June. His father, grandfathers and uncle will join him for a day or two along the route, which is the modern incarnation of the old Pilgrims’ Way.

The Pilgrims' Way was the historic route taken by pilgrims from Winchester to the shrine of Thomas Becket at Canterbury in Kent. Much of the traditional route of the Pilgrims’ Way is now part of the modern road network and walkers wishing to follow it to use the North Downs Way as an alternative.

You can sponsor Michael here http://bit.ly/mjt_ndw - what an inspirational young man.

London Marathon 2011!

Do you want to do something amazing for the CF Trust?

Entries for ballot places in the 2011 London Marathon are now open - they'll close when 125,000 applications are received which took just 4 days last year.

If you want to apply do it today at the link below and if you're lucky enough to get a place you can use it to run with us in our biggest fundraising event of the year!

Good luck!

http://www.virginlondonmarathon.com/marathon-centre/enter-virgin-london-marathon/

It's a fair cop!

Congratulations to Cat Pawlikow, age 29, who has CF and who works for Northumbria Police as a Community Support Investigation Officer. She just won the award for Outstanding Staff Member of the Year! Cat's job involves investigation of arrest packages, interviewing and charging prisoners, preparing files for court, obtaining statements, self-defence courses, first aid, drugs analysis and whole range of other skills. Well done Cat and keep up the good work!

The Big Cake Bake!

This year's CF Fundraising Week is 17-23 May and we have a special theme this year....The Big Cake Bake!

We all love cake, whether it's a victoria sponge, carrot cake or a cupcake and we want you to use cakes to help raise funds for the CF Trust. Whether it's a coffee morning or a cake sale all you need is a venue, generous slices of cakes and cookies, plenty of liquid refreshment and generous guests! You can host your event during CF Fundraising Week or at a time convenient to you earlier or later in the year.

Your guide to The Big Cake Bake is now available, along with posters and invitations, please contact our Events Team for a fundraising pack on 0300 373 1100 or email events@cftrust.org.uk - don't forget to include your name, address, postcode and a contact number - and you can get baking to help see off CF!

Find out more at www.cftrust.org.uk/help/nationalcampaigns/thebigcakebake

Employee of the month?

Lots of CF Trust employees do their bit outside of work hours to help raise funds for our vital research. Andrew Moran from Donations Support (He's the one on the far right in the photo above) told us a bit about what he is doing for the CF Trust this April.


My name is Andrew; I work on the Donations Support Team here at the Cystic Fibrosis Trust. For the last four years I’ve worked with my colleagues sending out what I would imagine to be thousands of thank you letters to all our lovely fundraisers and supporters. It’s a very rewarding job and I’ve always enjoyed working on the team.

My not-so-secret passion outside of work has always been live music. I started learning drums at school and since then I’ve been lucky enough to play all over Europe in various bands.

Recently I was given the opportunity to combine my two great interests by playing a gig in aid of the Trust. My current band Not Cool have been kindly asked by charity gig promoters Positive Action to play one of their fundraisers on April 3rd, nominating The Cystic Fibrosis Trust as their charity of choice for this particular concert

Over the last year Positive Action has raised hundreds of pounds for charities like Shelter and U-Turn. They recently held a very successful benefit concert for those affected by the earthquake in Haiti.

We’ll be joined by our friends Chapter Sweetheart on the night, and we are actually releasing a limited edition CD just for the gig featuring a couple of tracks by both bands. The venue will be the Victoria pub in Mile End, the premier music venue in that area, and all of the proceeds taken on the door (a cheap as chips £3 will get you) go to the Trust.

I’ll be honest – As you can imagine from our name my band is a bit noisy and may not be to everyone’s taste. But if you’d like a great Saturday night out at a good live music venue with a friendly atmosphere, and fancy raising some money for the Trust in the process, then please come along. Remember to come and say hello, it would be great to ‘place a face’ to some of the wonderful letters I get to read!

www.myspace.com/notcoolisaband
www.myspace.com/chaptersweetheart
http://www.myspace.com/thevictoriae3

Fancy abseiling for the CF Trust?

We have three different abseils happening in the UK this spring and we'd love you to join us for one of them - it's a great adrenaline rush and a fantastic challenge.

Invest NI, Belfast, 13 March - 160ft abseil down this most impressive building

Manchester United FC, 28 March - 140ft free air abseil from the roof of the North Stand

Celtic Football Club, 2 & 3 April - 100ft free air abseil from the South Stand

If you're interested visit www.cftrust.org.uk for more details or contact our Events Team on 0300 373 1100 or events@cftrust.org.uk

Does my bum look big in this?!

In more unusual fundraising news 16 year old Kristian Long organised a Sumo Wrestling Competition for his teachers. The students of Plume School, Maldon Essex had to pay to watch the teaching staff compete against each other and the event raised over £240 for the CF Trust. Well done Kristian...and the teachers for taking part in less than flattering outfits!

Max and his mankini

We had to blog about one of our very special fundraisers - 16 year old Max Richardson who spent Sunday walking up Southend High Street in a very fetching lime green mankini to raise money for us. Well done Max!

http://www.justgiving.com/maxmankini

Oxygen on flights

Many of you will be turning your mind to planning your summer holiday, in an attempt to get away from this winter gloom. We often see the topic of troublesome travel insurance discussed, with those with CF often dreading the prospect of hours on the phone to travel insurance companies facing hefty premiums and multiple refusals; but have you thought about whether you’re going to need supplementary oxygen when jetting off to sunnier climes?

A proportion of people with Cystic Fibrosis need supplementary oxygen when flying, due to the oxygen levels in the cabin dropping at high altitude. Charges for what is an essential for many, vary greatly, with some airlines such as BA, Cathay Pacific, Emirates, Thomson and Virgin all supplying free oxygen on the advice of a doctor; but others enforcing hefty charges of up to £500 per trip. A quarter of all airlines recently contacted by PHA-UK * do not supply supplementary oxygen at all.

Having done a spot of our own ‘secret shopper research’ we were disappointed not just with the costs some airlines enforce, but at the attitudes of airline employees when trying to arrange the oxygen. Extended periods of time were spent on hold, and some airlines claimed to simply ‘not know’ what to do about getting supplementary oxygen on a flight!

Together with the PHA-UK and the British Lung Foundation, we are working to change this situation. To help, please sign this petition.

*PHA-UK stands for Pulmonary Hypertension Association-UK

4 Peaks 4 Bikes 4 People

A team of four people from Basingstoke Bluefins Swimming Club are taking part in a charity bike ride and climb for the CF Trust and Bluefins Club. Andrew Cackett, Gareth Waller, Oliver McSoley and Gregory Thomas plan to conquer the four highest peaks in England, Wales, Northern Ireland and Scotland and hope to raise £10,000.

They begin their challenge on 10th August in Basingstoke and estimate the challenge will take between 10-14 days. They cycle to Snowdon and will complete their first climb (3560ft) before crossing to Northern Ireland to climb Slieve Donard. From there they will cycle to Scotland to climb the highest of the four peaks, Ben Nevis at 4480ft. The final climb is England's highest Scafell Pike before cycling home. In total the ride should cover an approx 1250 miles and a total climb of 4,256 metres.

For more info go to http://www.mycharitypage.com/cackett or www.4peaks4bikes.co.uk

Join Team CF this January!

Whether you've over-indulged this festive season or are always fit as a flea, join Team CF and Make a Difference!

We have the world's biggest and best running events here in the UK and, with your help, we'd like to make sure that in 2010, we have our biggest and best running team...

Over 35,000 people will take to the streets on 16 May for the fantastic Great Manchester Run 10k.

Entries open at 8.30am on Thursday 7 January and will fill in literally 3 or 4 days - the last 10,000 applications will go into a ballot this year so get your place confirmed early.

The Great North Run half-marathon on 19 September will see 54,000 runners head into South Shields.

The ballot for entries opens at 8.30am this Saturday, 9 January until 8 February so please apply now. Up to 8 January you can also enter the Daily Mirrors draw for a place too.

Please use your place to run with us and help to see off CF!