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Spring 2018 Newsletter – Answers to the 2017 UK Firsts Quiz

 

Q: Who was announced as the 13th Doctor Who?

A: Jodie Whittaker

 

Q: What is the biggest selling single of 2017?

A: ‘Shape of You’, By Ed Sheeran

 

Q: Who won the BAFTA for Best Film in 2017?

A: La La Land

 

Q: What was the best selling book of 2017? [Data from the Guardian]

A: Non-fiction = ‘5 Ingredients, Quick and Easy Food’, by Jamie Oliver ‘- sold 716K

A: Fiction = ‘Bad Dad’, by David Walliams – sold 568K

 

Q: Who won Strictly Come Dancing?

A: Joe McFadden

 

Q: What were the top 3 boys and girls names of 2017? [Data from the Office of National Statistics]

Boys                            Girls

Noah                           Olivia

Harry                          Amelia

Oliver                          Emily

Spring 2018 Newsletter is Here

For the Spring 2018 Newsletter, please click here

Ride London 100 Places Now Available

Are you a keen cyclist and want a serious challenge?  How about doing the Prudential Ride London 100 on Sunday, 29th July 2018.

Ride London really is a true gem of an event starting at the iconic Olympic VeloPark in Lee Valley, cycling 100 miles of closed roads past London landmarks and through the stunning Surrey countryside (and hills!) and finishing in champion-style at the Mall outside Buckingham Palace!  It’s the UK’s largest world-class festival of cycling.

You don’t have to be an elite cyclist, however, and can choose a start time based at your level – you just need to be able to finish the course in under 9 hours and be over 18.  More info for riders can be found here.

Breathing Matters has a limited number of guaranteed places for this year’s event.  Registration is £50 and we ask that you raise £450 for Breathing Matters.  To sign up, email us at breathingmatters@ucl.ac.uk

The deadline for sign ups is Tuesday, 22nd May 2018, so don’t delay.

 

 

 

Bronchiectasis Newsround

 

Upcoming  News:

In April, a new research registrar, Dr Jocelyn Hall, will join the lung infection group for at least one year. She will be dividing her time between working with patients in the bronchiectasis clinic and on the ward, and starting some new research projects into bronchiectasis. In particular, she will be investigating how bronchiectasis affects the immune response to important causes of lung infection such as Streptococcus pneumoniae.  The Brown group has new methods of looking at how someone’s immune system recognises the bacteria and these will be used in patients with bronchiectasis to see whether there are any weaknesses in their ability to fight off lung bacteria that might mean they are more likely to get infections.

 

Research Paper:

In November, new UCL research into bronchiectasis findings were published in the European Respiratory Journal.  In this study by one of our previous research registrars Dr Arash Saleh and led by Dr John Hurst, we looked into risk factors for cardiovascular disease (heart attacks, angina and strokes) in patients with bronchiectasis. We previously published a paper using data from GP patient databases to show that people with bronchiectasis have roughly double the chance of having cardiovascular disease that would be expected. In the new paper, we have looked more closely at 101 people with bronchiectasis using a special ultrasound machine to measure the stiffness of the blood vessels in their arm.  What we found was that the arteries were stiffer than expected, especially in patients with reduced breathing capacity or frequent infective exacerbations. This is important as stiffer arteries are more likely to cause cardiovascular disease. Hence these results back up the previous epidemiology paper and further demonstrate that, as well as looking after the lungs, we need to think about reducing cardiovascular risk in patients with bronchiectasis.

 

 

Our Most Important Lung Fibrosis Paper to Date

We are delighted to announce the publication of our collaboration with the Insititute of Nuclear Medicine and our most important lung fibrosis paper to date. This work investigates the use of molecular imaging to more accurately determine disease severity in patients with pulmonary fibrosis.

Win T, Screaton NJ, Porter JC, Ganeshan B, Maher TM, Fraioli F, Endozo R, Shortman RI, Hurrell L, Holman BF, Thielemans K, Rashidnasab A, Hutton BF, Lukey PT, Flynn A, Ell PJ, Groves AM. Pulmonary 18F-FDG uptake helps refine current risk stratification in idiopathic pulmonary fibrosis (IPF). Eur J Nucl Med Mol Imaging. 2018 Jan 16. [Epub ahead of print].

For the last 5 years, Breathing Matters has collaborated on a programme investigating the ability of PET scanning to more accurately predict prognosis in individual patients with IPF and other forms of lung fibrosis.

[Combined high resolution CT image (Left) and PET image (Right) in a patient with IPF. The CT images (A) show honey comb lung (arrow) and PET images show high signal in the honey comb area (black, at site of broken arrow). Groves et al J. Nucl Med. 2009;50:538-45.]

The newly published paper in the European Journal of Nuclear Medicine, consisted of a unique 10-year prospective study of 113 IPF patients (the largest PET study in IPF) and the first of its kind to evaluate the use of FDG (glucose metabolism) PET scanning to predict prognosis and disease progression against the current standard, Gender Age Physiology (GAP) scoring system.

The findings demonstrate that FDG (glucose metabolism) PET scanning can help identify patients with IPF who are at increased risk of death and might therefore benefit from early treatment.

The figure below shows, for the first time,  that patients with IPF who have a higher lung glucose metabolism are significantly ( p<0.003) more likely to deteriorate rapidly, despite having features that would conventionally place them in a good prognostic group. This data suggests that current treatment guidelines may need to be reviewed, as currently patients placed in a conventionally favourable group are not recommended for treatment.  This novel imaging biomarker may allow us to evaluate new treatments more quickly by looking for changes in PET signal in individual patients.  This will mean that smaller cohorts of patients will be needed for clinical efficacy trials, with a reduction in time to bring new medicines to patients.

Dr Porter reports, “This is a potential game changer in the stratification  of patients with pulmonary fibrosis, giving additional information that complements the current GAP score and allows us to more accurately predict outcomes for individual patients.  This means that we can reassure patients with a low glucose uptake on the scan; but intensify follow-up, treatment and early transplant referral in those patients with high glucose uptake. This is better for patients and allows us to provide a more effective and efficient ILD service”.

 

2017 Roundup – What You Helped Us Achieve

We would like to thank to you all for your loyal support over the last year and for giving so much of your time and funds.  Since our launch in January 2011, you have helped us raise £500K – without you, this simply would not have been possible.  We thank you!

So, what have we done with all your raised funds?  We have spent this wisely and here are a few important areas of research where your money has been focussed in 2017:

  • We recruited a fabulous clinician, Dr Helen Garthwaite, to be our Mark Hulme Clinical Fellow. Helen has pioneered the use of anticoagulation in IPF and has established the first clinical trial of directly acting antithrombin agent, dabigatran, in IPF. We have now started recruiting to this study and the first two patients have completed the trial. We hope that the results will be available shortly and may provide the impetus for a much larger study.
  • We held a patient and public event for IPF.  There were presentations on our research projects including our work on rheumatoid arthritis associated ILD, platelet and clotting in IPF, genetics of IPF and novel imaging in IPF.  We also met with old and new friends and established our research priorities for 2018.  We plan a much larger study of anticoagulation in IPF.
  • We completed our PET scan in IPF study which has been accepted for publication. This showed that PET scans are able to help us more accurately define the prognosis in patients with IPF.  A big thank you to the 112 patients with IPF that have given up their time for scanning over the last 5 years.
  • We published three papers on bronchiectasis which show that, although bronchiectasis is a pure lung disease, the ill-health it causes results in patients having a higher risk of diseases affecting the blood vessels in the heart and brain.

Leveraged funding: Importantly, the money that has been raised for Breathing Matters has allowed us to carry out some early seed projects. The results of these early studies have then allowed us to leverage an additional two million pounds from other sources including the Medical Research Council, The British Lung Foundation, The National Institute for Health Research and the Biomedical Research Centre since 2012.  This means that, for every pound contributed to Breathing Matters, we have leveraged another £4 that will all be put towards finding better treatments for patients.

It was lovely to see so many of you at our #Breathtember Patient/Supporter Pulmonary Fibrosis/Interstitial Lung Disease Focus Group in September and our Patient/Supporter Bronchiectasis Meeting in October. At the ILD event, Dr Porter along with our fabulous clinical fellows and scientists presented their integral and very interesting research work into PF and ILD. The ILD focus group discussed future areas of research into these conditions. The scientists loved meeting everyone at the ILD Meeting and one scientist said that meeting you helped ‘motivate us to do more and do it better and quicker’. At the Bronchiectasis Evening, Professor Brown explained what we know about bronchiectasis and what we still need to find out; and, importantly, how Breathing Matters can help. This was followed by a lively Q+A session when Professor Brown answered some in-depth questions on the treatment of the disease.

We have had two successful fundraising events in 2017, Cyclotopia and our Christmas Concert.

  • Cyclotopia is a bike fest of FUN events at the Lee Valley Olympic VeloPark from road cycling, mountain trail and track cycling.  It’s for all ages and experience. This year’s event is on Sunday, 20th May 2018 – mark it in your diary now.  Click here for news from last year’s Cyclotopia.
  • Our Christmas Concert is held in the iconic St Paul’s Actors Church in Covent Garden, which in itself is worth a visit. We are entertained by the renowned and internationally acclaimed Holst Singers and we also have celebrity readers. It is a fantastic way to start off the festive season  Watch out for next December’s date.  Click here for a roundup of last year’s concert.

If you haven’t attended these events yet, please consider coming along during 2018.  We are proud of these bespoke events; and, as they are so different, they should appeal to all of you!

Awareness is continuing to increase.  People are starting to notice pulmonary fibrosis and lung infection / bronchiectasis.  Let’s continue the good work.  Our supporters on the website, facebook and twitter have now increased to a potential 4000 supporters.  We need as many supporters as possible to help raise awareness of pulmonary fibrosis and lung infection, so asking your family and friends to like/follow us will help, and more retweeting too.  You might like to put our newsletters, leaflets, stickers or windmills on posterboards around your local area – we are always happy to provide these for you. Perhaps you could wear our stylish pin badges – email us to purchase these. Stories in the media are a fantastic way of raising awareness for Breathing Matters, and thank you so much to those of you who have managed to get your stories on radio and newspapers during the last year.

All of us from Breathing Matters hope you have a Happy and Healthy New Year !

 

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A Festive Feast of Singing

We had a fabulous evening last night at St Paul’s Actor’s Church, Covent Garden, for our annual Christmas Concert. We were entertained once again by the magical Holst Singers. The concert was sold out and the audience interaction almost brought the house down with popular renditions of ‘Hark! the Herald Angels Sing’ and ‘Once in Royal David’s City’.

Thank you to BBC Radio presenters, Nigel Rees and Charlotte Green who amused us with hilarious Christmas readings.

Thanks also to the fabulous volunteers who worked tirelessly to make the event go smoothly and to Pharma Profile who sponsored the concert.

But a very special thank you goes to Jane Walker who organised the concert and, if you look closely, you can see her singing along with the choir on one of the photos below!

What a wonderful evening to start off the Festive Season.

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Autumn 2017 Newsletter is OUT NOW

 

For our Autumn 2017 Newsletter, please click here

 

 

Answers to The Christmas Card Quiz, Autumn Newsletter 2017

 

Q: When is the last 1st Class UK postal day before Christmas?

A: Thursday, 21st December 2017

 

Q: What year was the first commercial Christmas card sent?

A: 1843

 

Q: In the UK, how many Christmas cards are posted each year?

A: 1.8 billion

 

Q: How many people are on an average Christmas Card list per household?

A: 50

 

Q: Where can you buy our Charity Christmas Cards? 🙂

A: CharityChristmasCards.Com

 

Will you be a doer, a goer or a giver at Christmas?

 

If you are a doer – why not organise your own Christmas event … a cheese and mulled wine evening, a harvest festival, a Christmas swish party (exchanging glittery outfits for a donation) or join a Santa Run.  Have a look at our events page for inspiration: http://bit.ly/2zFd6fM

 

If you are a goer – why not attend our Christmas Concert on Friday 8th December 2017 at 7.30pm in the beautiful St Pauls Actors’ Church in Covent Garden.  There will be traditional carols along with interactive Christmas tunes. Tickets are £25. This really is not to be missed and starts off the festive season so nicely! For more information, visit: bit.ly/2tIYbO9   

 

If you are a giver – why not support us by buying charity Christmas Cards, you can order directly online with CharityChristmasCards.com  They sell paper cards, online cards and corporate cards.  Up to 50p per card is donated directly to Breathing Matters.

For those of you around the London area, why not come along to our Charity Christmas Stalls on Friday 17th November 2017 or Friday 1st December 2017, 11am-1pm, at UCH Atrium for stocking fillers, jewellery and designer Christmas cards. If you are interested in purchasing our handmade Christmas cards which Jane Walker has designed, contact us directly on breathingmatters@ucl.ac.uk

 

A lot of you simply donate to charity instead of spending too much money on obligatory Christmas pressies.  If you do this, you are also considered ‘a giver’ and are much loved by all.

https://www.justgiving.com/breathingmatters

 

Would you like to find out what type of Christmas charity supporter you are?  Read our article: http://bit.ly/19gNAoH

A very merry Christmas to all our fantastic supporters.  A healthy and happy Christmas to all doers, goers and givers!