News Archive 2010
QVC and Honora Pearls support the CF Trust
On Wednesday 22
December the shopping channel QVC will be supporting the Cystic
Fibrosis Trust. Their first ever 'QVC Cares' Day will feature 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. They will kindly donate 15% of the purchase price of all jewellery sold throughout the day to the CF Trust. Find out more on
the QVC website.
Belfast Meeting Postponed 20.12.10
The parents meeting planned for today at 12.30pm at
the NICVA building has been postponed due to the weather. The meeting
will be rearranged for the beginning of January 2011 and we will
confirm the new date as soon as possible. Members of the NI Council of
the CF
Trust and the Medical Team at the Children's Unit will be at the NICVA
Building
from 12.30pm for any parents who don't receive this message in time and
will
take the opportunity to hear their views. If you would like to contact
someone in the meantime please
call Conrad Murphy on 07756527917 or email conrad_murphy@hotmail.co.uk
Denufosol shows encouraging results
A new drug may benefit
Cystic Fibrosis patients with normal to mildly impaired lung function
according to the latest clinical trial results. Denufosol is a new type
of drug that could delay or prevent lung disease progression in
children, teenagers and young adults with Cystic Fibrosis by helping to
prevent formation of sticky mucus.
Denufosol belongs to a class of drugs known as ion channel regulators. These drugs help balance the flow of ions through cell membranes, helping normalise the airway surface hydration and mucus clearance impairment present in people with Cystic Fibrosis.
The CF Trust has been following
the research closely and studies to date have shown promising results in people with Cystic Fibrosis who have a good lung function. Further
trials are underway but it is estimated that patients could benefit from this new drug in 3-4 years. For more information read the full press release from the American Thoracic Society or read this article from BBC News.
Cherry Tree House
The Belfast Health and Social Care Trust is planning to close Cherry Tree
House Adolescent Unit at Royal Belfast Hospital for Sick Children
(RBHSC). Click here to read more.
DLA Reform
The Government have announced a consultation on DLA reform. We would like to hear your views. Visit our Welfare Reform page for more details.
Getting Nosey About CF with Oli and Nush
Our new film for children about CF is now available to view online, DVDs will be available soon please visit this page for more information.
Fitness to Work tests
An independent review of the Work Capability Assessment has found that the tests need to be reformed to make them fairer and more effective. The
CF Trust broadly welcomes the findings of Professor Harrington's report, and we look forward to working with the Department of Work and Pensions to ensure that work capability assessments carried out take into
consideration the needs of those with Cystic Fibrosis.
BBC Horizon
A new documentary about genetic research airs on
Monday 25th October at 9pm on BBC2. The programme features Sophie
Longton, who has CF and Professor Eric Alton from the UK CF Gene Therapy Consortium. More info.
Equality Act 2010
New equality rights in the workplace came into force on 1 October. More info
Make sure you get your flu jab
People with CF should make sure
they get their annual flu jab each autumn. To find out more contact your GP or CF centre, visit the NHS website or call NHS Direct on 0845 46 47
Vote for us!
Please vote for the Cystic Fibrosis Trust at www.Lucaskeepsrunning.co.uk
so we can benefit from Lucas raising £10k for charity next year. You can vote
as many times as you like and anyone can vote so please pass it on and vote
often until 10 October!
A warm welcome to our new Chief Executive
Matthew Reed has
been appointed as the new Chief Executive of the Cystic Fibrosis Trust
following the retirement of Rosie Barnes in August. He began his new
role on Monday 6 September. Read our 
press release.
Great North Swim postponed
The
swim on Lake Windermere this weekend (4 & 5 September) has been
postponed due to the prevalence of blue-green algae leading to safety
concerns. Nova International hope to announce a new date next week.
Coast to Coast challenge
TV
presenter Ben Shephard, CF dad Andrew Roberts and Ivan Hollingsworth
are currently running a marathon a day for five days in their epic
Coast to Coast challenge. Money raised will benefit the CF Trust and
the Children's Heart Unit at the Freeman Hospital. Find out more on the
website or follow on twitter http://twitter.com/seb4chuf and http://twitter.com/benshephard
RCN campaign
We're supporting the Royal College of Nursing's Frontline First campaign against cuts to jobs and services in the NHS http://tinyurl.com/37nhjol
Availability of Vitamin K
We are aware that there have been some issues around the availability of Vitamin K. The UK CF Pharmacist Group has prepared an 
information sheet giving some background and treatment options.
Welfare reform
We have prepared a statement on
the proposed changes to the benefits system. We will be engaging with
government to ensure people with Cystic Fibrosis are treated fairly.
Jenny Agutter
Our patron and trustee Jenny Agutter talks about her experiences with CF on the
BBC website
Opus Energy pledge to raise £10,000 for CF Trust
Opus Energy has pledged to raise £10,000 throughout 2010/11 for the Cystic
Fibrosis Trust. Read more here.
Proposals to give free prescriptions to people in England with long-term conditions have been put on hold due to financial pressures on the NHS. Health minister Simon Burns said a decision on prescription charges and exemptions cannot be made before the spending review due in the autumn. An early day motion has been put down once again this year by Bob Russell MP. Please ask your MP to show their support and sign it. You can read our manifesto for people with CF and a press release by David Tredinnick MP on prescription charges here.
Ward closure and specialist nursing cuts in Scotland
It is come to our attention that Ward 6b at Yorkhill Hospital has recently closed. We have also found out that CF nurse specialists across Scotland have been asked to spend 20% of their time on general ward rather than treating those with CF. We are keen to hear from parents/patients as to whether these issues have affected the care you/your child receives. Please contact Yvonne Hughes, Expert Patient Adviser for Scotland on yhughes@cftrust.org.uk or 0300 373 1051
12 year old schoolboy fundraiser raises thousands for the CF Trust
We are amazed by 12 year old schoolboy Michael Turner who is doing a 115 mile walk for us in May and has already raised a staggering £17,500. Read our blog.
Celebs vs MPs football match
Well done to our celeb team who won 3-1 against a team of MPs at our annual charity football match at Stamford Bridge on Tuesday 11 May. Have a look at the photos.
Volcanic Ash
We have been advised by a Specialist CF
Consultant that the volcanic ash does not pose a special threat to those with Cystic Fibrosis. If people use an inhaler for asthma, they should
carry it with them. For more information visit the Health Protection Agency.
With the date for the General Election now set at May 6, we have created a CF Manifesto of what we expect for people with CF from whoever forms the next Government. Find out more and download our posters and manifesto.
Fundraising in CF Week
Many people choose to spread awareness of Cystic Fibrosis by completing a house to house collection during CF Week (17-23 May). Please contact the events team at events@cftrust.org.uk to order all the resources you require if you would like to take part. If alternative weeks would be more convenient for you, please get in touch as we can arrange permits for any time of year.
The Big Cake Bake
The theme for this year's CF Fundraising Week 17-23 May is The Big Cake Bake. Why not have a coffee morning, cake sale or afternoon tea party to help raise funds for the CF Trust? Tell us what your favourite cake is in our online poll.
Check the expiry date on your Epi-pen
Some of you may have
an epi-pen and we have been asked to remind you to check the expiry
date. If you epi-pen has or is about to expire its efficacy will be
reduced. You can find out more and register for a free expiry alert on
this website.
Dance Aid
We're thrilled that the Dance Aid event at Pacha London raised £2510 for the
CF Trust. The next event is at Amadeus Rochester on April 1st. Find out
more on their website or facebook group.
National Pandemic Flu Service
The National Pandemic Flu Service (NPFS) will close from 1am on Thursday 11 February 2010. This closure is in response to a steady reduction in the estimated number of swine flu cases and reflects an appropriate
response to the level of threat that the virus now poses.This will apply to both the telephone and online services.
Northern Ireland Raffle
If you're in Northern Ireland and have received your raffle tickets please check them as a small amount of tickets were sent out dated 2009.
Please contact Linda Alexander on lalexander@cftrust.org.uk or 0845 859 1021 if this is the case.
January Conference
Thank you to all of you who came to this event. For those of you who weren't
able to attend there is a update on gene therapy in the latest issue of
CF Today.
Oxygen charges on flights
New research from PHA-UK reveals bewildering lottery of charges faced by those who need supplementary oxygen in order to fly. Sign their petition.
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.
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.
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.
