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!