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

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
http://news.bbc.co.uk/1/hi/health/7908445.stm

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."

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.

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

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.”

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.

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

Sign up today at http://www.organdonation.nhs.uk/

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.

Do you know someone who deserves an award?

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.

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!

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.

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!