News Archive 2009
Research into CFTR protein
Researchers have made an important discovery about the defective protein that causes cystic fibrosis. Read the press release from the University of Bristol.
Reconditioned lungs transplant breakthrough
The
CF Trust has helped to fund research which 'reconditions' damaged lungs
in a labaratory making them suitable for transplant. Read more about
this in The Times.
Deloitte
We've
been shortlisted by Deloitte for their next charity partnership. They
will choose 3 charities to support over a 2 year period based on a
staff vote which starts today and lasts until 17 Dec. If you know
anyone who works for Deloitte please ask them to vote for us.
Blow the whistle on Cystic Fibrosis
Ciffy the steam
tractor will attend the Rochdale/Heywood Christmas light switch on at
Heywood Civic Centre from 10 am Saturday 28 November. Ciffy is owned by
fundraisers Bernard and Janet Akin who will be inviting the public to
'blow the whistle' on Cystic Fibrosis by pulling the engine's very loud
steam whistle in exchange for a donation.
Vicks Sinex Spray
A batch of Vicks Sinex spray may be contaminated with Burkholderia Cepacia, and is being recalled by Procter & Gamble.
Patients with Cystic Fibrosis who have been using Vicks Sinex Micromist
Aqueous Nasal Spray Solution, 15ml should call 0800 555 515 to see if
their batch has been affected. If it has we recommend they contact
their CF consultant. There have been no reports to date of anyone
falling ill from the sprays.
Buy your Christmas cards
It's not long til Christmas so visit our shop and check out our range of charity Christmas cards or click here to find out more about our Christmas e-card.
Faith the album
A charity album featuring young talented singer-songwriters is set to raise vital funds for the CF Trust. Find out more.
Swine flu guidelines
The CF Trust has worked with the Department of Health to produce these> swine flu guidelines for people with CF. These are being updated regularly and the document is dated when it was last checked.
BBC Radio 4
There will be a programme on CF gene therapy
clinical trials on Tuesday 13 October at 9pm repeated on Wednesday 14
October at 4.30pm.
Make sure you get your flu jab!
People
with CF should be immunised against flu each autumn. The vaccine is
available from your GP practice. To find out more about getting a flu
jab visit the NHS website or call NHS Direct on 0845 4647.
Alex Stobbs
Alex is a very talented musician and conductor
with Cystic Fibrosis (CF) who has inspired many people all over the
world. Alex's book 'A Passion for Living' published by Hodder &
Stoughton is available from all good bookshops and online retailers.
The follow up documentary to 'A Boy Called Alex' entitled 'Alex: A
Passion for Life' will air at 9pm on Thursday 8th October followed by
Alex conducting Bach's St Matthew Passion at 10pm on More4. You can
watch the trailer here and follow Alex's progress on facebook here.
If you have been inspired by Alex and would like to make a donation to his chosen charity, the Cystic Fibrosis Trust, click here.
Charity single and album
A charity single and album are set to raise funds for the Cystic Fibrosis Trust this autumn. More information is at http://www.faithalbumlaunch.co.uk/
Postal Strikes
If you're waiting to receive information
from the Events Team there may be a delay due to the current industrial
action - please contact events@cftrust.org.uk or 0845 859 1100 for further information.
Stormont Big Bounce - Date Change
The Stormont Big Bounce has been postponed until the 31 October 2009.
Read about Kirstie in The People 07.09.09
Read about 19 year old Kirstie Mills from Devon who uses dance as a form of physiotherapy http://tiny.cc/BPy25
Swine flu guidelines
The CF Trust has worked with the Department of Health to produce these 
swine flu guidelines for people with CF. These are being updated regularly and the document is dated when it was last checked.
CF Trust fundraiser is fastest at Capital to Coast
More
than 1,600 cyclists took part in the Capital to Coast Cycle Challenge
for Charity on Sunday 28 June to raise funds for several charities,
including Norwood, the Down's Syndrome Association, the Cystic Fibrosis
Trust and Heart's Have a Heart appeal. The fastest rider was 18 year
old CF Trust fundraiser Alex Crossland from Haynes near Bedford.
Swine Flu 11.06.09
Whilst there is no cause for alarm, we advise that the CF community read this 
document and the NHS guidelines for swine flu
Airline charges for oxygen
We are supporting the British Lung Foundation's campaign to end airlines charges for oxygen. Find out more.
MPs are good sports at charity football match 20.05.09
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. 
New data shows future is brighter for CF patients 08.05.09
The
Cystic Fibrosis Trust has released new data about Cystic Fibrosis
patients in the UK on the eve of its annual fundraising week (CF
Fundraising Week 9-17 May). Read the press release and the report.
Charity football match at Stamford Bridge
Football greats
Gus Poyet, Luther Blissett and Mark Bright along with Angus Deayton and
DJ Spoony are playing for the CF Trust against a team of MPs at our
annual charity football match at Stamford Bridge on Tuesday 19 May.
The celebrity Cystic Fibrosis Trust XI will be challenging the UK Parliamentary Football Club. The match aims to raise awareness and funds for people with Cystic Fibrosis (CF), the UK's most common life-threatening inherited disease. Andy Burnham MP, Secretary of State for Culture, Media and Sport, is hoping to attend and play for the UK Parliamentary FC as well as present the trophy to the winning team.
22 year old Michael Winehouse who has CF, is part of the Cystic Fibrosis Trust XI. He is being sponsored by friends and family to play. He said "I play football on Sundays for the East London Knights and can't wait to get the chance to play at a premiership ground. I'm fairly lucky with my CF, I've had my ups and downs but some people my age are too ill to run around a football pitch. I hope to raise plenty of money to help fund research into the condition." You can sponsor Michael at http://www.justgiving.com/michaelwinehouse
The Nicky's Whisper Challenge Trophy Football Match sponsored by National Grid is now in its sixth year. The teams are playing for the trophy in memory of Nicky West, who had CF and was a tireless ambassador for the Cystic Fibrosis Trust. Chelsea FC have kindly donated the use of their ground for the match.
Read the full 
press release or look at photos from last year in our gallery.
You may have read or seen in the news, stories about swine flu. We are keeping an eye on the situation and will let you know if there are any recommendations for people with Cystic Fibrosis. There is more information on this US medical website. If someone with CF is returning from the americas and has flu symptoms, or has been in contact with someone who has, they can contact their CF Centre for anti flu medication.
Mouthwash Recall
Mouthwash manufacturer Robert McBride
Ltd has recalled 17 products after discovering through routine tests
that they have been infected with the bacteria aerobic mesophile. There
is no evidence that this will cause any problem for people with CF but
because of the small chance the contaminated mouthwash could affect
people with chest infections or a susceptibility to lung infections the
products have been recalled as a precaution. If you have any concerns
contact your CF doctor. For a full list of affected products, which
includes Dentyl pH, Dentimint, and some Tesco, Asda and Superdrug own
brands call 0800 917 1187.
Cystic Fibrosis team defeat Commons & Lords in Twickenham charity match
An
annual charity match brought a team of MPs and a team of CF Trust
supporters on to the hallowed turf at Twickenham Stadium on Weds 8
April raising £20,000 for the Cystic Fibrosis Trust. Read more
Prescription Charges in Scotland
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.
Whistling for CF
Fundraiser Johanna Branston will be taking part in the World Whistling Championships to raise money for the CF Trust. Click here to read more.
Prescription Charges
The British Medical Association
(BMA) has called on the government to abolish prescription charges for
all patients in England. What do you think? Answer our poll.
Find the CF Trust online
The CF Trust now has its own blog, Flickr group, You Tube channel and Facebook
fan page so please find us online and check out our pages. We would
also love you to add your own photos of daily life with CF or
fundraising events to our Flickr group.
Gene therapy pilot begins 26.02.09
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 excited to reach
this stage.
Response to IFRD1 gene story in the news 26.02.09
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.
A UKCFGTC spokesperson commented:
"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."
Some of you may have seen the story in the news about research into using a 'super' virus in gene therapy for CF. Our response is below. 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."
Christmas card competition
We are calling all budding artists under the age of 14 to design a special Christmas card to go in our catalogue for 2009.
Record number of people on organ donor register
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. You can sign up here.
Make sure you get your flu jab!
People
with CF should be immunised against flu each year. The vaccine is
available from your GP practice. To find out more about getting a flu
jab visit the NHS website or call NHS Direct on 0845 4647.
Mobile phones in hospitals
Hospitals in England should
consider allowing more liberal use of mobile phones, following new
guidance issued today by the Department of Health. The updated guidance
indicates that NHS trusts should consider giving patients, staff and
visitors the widest possible use of mobile phones, where it doesn't
interfere with equipment, the privacy of others or cause a nuisance.
Click here to find out more.
Winter Fuel Survey
We
are doing some research on winter fuel payments. As some people with CF
may be at home for long periods of time, we want to find out if people
are having difficulty heating their homes due to the increasing cost of
fuel. If you would like to take part in our survey, click here.
When Luke met Joe....
Joe Cole made a young boy's
Christmas dreams come true as he visited budding footballer Luke Phair
at the Royal Brompton Hospital. You can see some photos in our gallery.
Luke is suffering with Cystic Fibrosis but despite his illness is a promising young footballer with an ambition to become a professional player.
Joe, who is a patron of the Cystic Fibrosis Trust, underwent lung tests with Luke and handed over a signed pair of his boots as well as his Chelsea Champions League match shirt.
The two then borrowed a football for an impromptu kickabout in the hospital reception as patients and visitors looked on in amazement before Joe went on the main ward to bring some seasonal cheer to young patients.
Luke, aged seven, said: "I really liked meeting Joe Cole, he was great and I loved playing football with him!"
Joe was impressed with Luke's skills commenting: "He's the next Chelsea star!"
The midfielder who is a long standing patron of the Cystic Fibrosis Trust has undertaken various publicity campaigns to highlight their work. "This is a subject very close to my heart. I'm only too happy to do anything I can to help or raise awareness of the disease."
Luke's visit was part of the Creating Chances programme, which raises awareness of the Premier League clubs' work within their communities.
Dr Ian Balfour-Lynn, consultant in paediatric respiratory medicine at Royal Brompton Hospital, said: "It was fantastic to introduce Joe to patients and staff at the hospital and to show him around our specialist facilities which are used to treat over 300 children with cystic fibrosis. Joe's visit will have inspired many of the children he met. Exercise and sport are so important for children. We're very grateful to him for supporting our work."
Sarah Guthrie, director of fundraising at the Cystic Fibrosis Trust said: "We were delighted that Joe was able to visit Luke and other children at the Royal Brompton today. Young people who have Cystic Fibrosis often have frequent visits to hospital to ensure that their lungs stay healthy. Joe was able to experience for himself what it is like to undergo some of the regular tests these young people have to go through. The team at the hospital work very hard to keep those with CF as healthy as possible so they may benefit from life-saving gene therapy in the future. Joe is a great patron for the Cystic Fibrosis Trust and is always keen to heighten awareness of this life threatening condition whenever he can."
